Tuesday, June 10, 2008 Donna Jo, Community Member, asks

Q: Treatment for primary progressive MS

I was diagnosed with MS in Aug 2007. They think I have primary progressive. Since my diagnosis I just don't feel like the Doctors at the MS clinic are doing much to help me. This leaves me frustrated and constantly searching the internet for my own answers. I am an otherwise healthy 44 year old female who was very athletic prior to my MS. I take ditropan 10mg, baclofen 10 mg 2x and gabapentin 300mg 2x. Other than that I feel like I'm on my own. I stay as active as I can and go to physio and massage regularly as well as yoga, gentle martial arts and water aerobics.  I guess my question to you is: What can I ask of the MS clinic to help me? I hope this makes sense. I search and research on my own and take vitamins, CLA, Recovery and omega 369. I read that this is all good for me. I feel like Im just fading away though and I am willing to fight to the end!

 

Thank you for your time.

Donna Boone 

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Answers (51)
sue, Community Member
6/10/08 10:32pm

Thanks so much for your question Donna.  Primary-Progressive MS must be really difficult manage.  So when you and your doctor are not in sync, it can be frustrating.  If you already haven't tried, you might try expressing your feelings to you doctor and other practioners at the clinic.  It might be that they are just not clear on what you need from them. Honest and open communication is essential for your continued care.

 

As well, you might consider finding other tyoes of support - through groups that focus on MS.  Maybe there is a local chapter of an organization that could offer something more than strictly medical care.  Finally, you can look at other doctor and hospital options in your area.

 

Hope this helps and all the best, sue

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judigail, Community Member
8/27/11 6:21pm

Hi Shelly, Your post generated much interest in my camp.  Our cases are similar yet different as most are.  I have lived with MS since being diagnosed in 1958; yup, 55 years, count 'em.  Now I have been told my Relapsing-Remitting MS is now Primary Progressive MS.  I know it is so after researching the net and realizing that my balance and other symptoms are actually PPMS.

http://www.msovercomertips.com is the website blog I established to chronicle my success.  Now I need to go on there and amend a few things. However, I still am going to keep up with my exercise, healthy eating, vitamins, and faith to keep me going strong!

 

God Bless You,

 

Gail

andante@cox.net

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Carol, Community Member
4/28/13 2:50pm

Hi Gail, I'm Carol, and I applaud your effort! I was diagnosed with MS in 1983 and now it is PPMS. I too exercise, eat healthy (most of the time), take vitamins, and depend on my faith and the love of family and friends to keep me strong. I was told by my neurologist that there no drugs that will improve me, only drugs that might make my symptoms easier to live with. Because of the MS will I end up in a nursing home?

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Shelly, Community Member
6/17/08 10:06am

Hi Donna. I read your question and had to respond.  I too was diagnosed with MS in August of last year. We need to make sure we have cheesecake or something to celebrate that anniversaryFoot in mouth. All joking aside, I have multiple lesions and have switched neurologists because I was feeling the same way that you are--not getting anywhere. I have been told that I am functioning well for the number of lesions and where they are located. I am on all the same meds as you are (it is great to meet you) I get frustrated wondering if there is anything else I can do to feel better.

 

It sounds like you are doing all of the right things with your vitamins and staying active. Have they put you on any MS therapy? I read somewhere about the IV drug Tysabri being used for primary progressive MS. That is what I am on--3 infusions so far. I was told that I probably have RR, but I still am not sure what they use to determine the label they give us. I will be 40 in August, and somedays it is hard to think of working full-time for too many more years. I just take it one day at a time.

 

Don't feel bad about calling your docs to get more answers. You are your best advocate---that is what I am finding out through all this. You deserve answers and cannot sit idle in this disease. I was so thankful when I switched neuros and kind of proud that I made a step to be my own advocate. I still have not much faith in my general doc, but I will take MS info to her to read. When my legs feel like concrete, I diagnose myself with an infection and I am usually right! Then I tell them what to prescribe. I might actually send them a bill! Have a great day and keep your chin up.

 

Shelly

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sps2045, Community Member
10/12/10 1:15pm

My wife was taking Tysabri infusions for more than 1 year but it didn't help her at all. She has progressive MS and Tysabri is really for Remissive MS. I told the MS nurse yeterday that she no longer wants to take the avonex since that is also for Remissive MS and hasn't helped either.

 

Steve

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Dani-Rae, Community Member
12/22/10 2:27pm

I was diagnosed in Nov of '07. I also refused to take the Avonex my neuro prescribed. I told the ppl @ Avonex, though, not my dr. The woman @ Avonex actually had to put me on hold to look up various pieces of info, then came back to the phone with, "You're right! There is no indication that interferon treatments will help at all with PPMS! OK, thank you." The last lady I spoke to @ the neuro's office had the audacity to flat-out tell me that respiratory problems have nothing to do with MS!!! REALLY?? Then why did I have 2 bouts of pneumonia & a MAJOR upper respiratory infection within the span of a year between March & Dec of '09? The first bout put me in ICU for 6 days & almost killed me!                                                                                                I believe there IS a cure, but our government will never allow it because to cure a debilitating, non-terminal disease would force the medical community & drug manufacturers to take a HUGE hit! My fiance has type 1 diabetes & he believes the same. The cure is stem cell therapy. I have a FB friend in Sweden who wants me to come visit & get stem cell therapy while I'm there. Unfortunately, I'll never be able to afford to do that. I had to let a couple of bills go this month so I could get my children something for Christmas!

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teddy bear, Community Member
1/ 9/11 12:16pm

it took me over a year and 12000 dollars of my ins. to get a diagnosis of spinal m.s. i was so frustrated going from doc to doc telling me we cant find anything wrong with you. one doc told me to up mu neurotin to 3600 mg and call if i had any more problems. if the first neuro. had done a spinal tap i could have saved a lot of aggravation. you really have to do your own investigating and accept the fact that there are a lot of docs out there who are idiots. i believe i have primary progressive and i take prednisone but it only works when i take more than im supposed to. if anybody has a good med. that has worked for them please let me know. thank you

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tessmalone, Community Member
7/ 2/11 2:56pm

i am new to this site. i have been ill since may 1996, actually about 9 months before that symptoms started but may 96 was when they admitted me to hosp for diagnostic testing to see what was wrong with me.  YEARS AND YEARS have passed, i have been diagnosed with SEVERAL diseases one being primary progressive MS. i am so so SOOOOoooo frustrated with being disabled.  each year i am a little worse than the prior yr. my family and dr's notice it more than i do.  i am a very athletic 46 yrs old who's body WILL NOT keep up with this old lady.  i have not been to a MS support group meeting since 97 and have no communication with the outside world really. i would like to talk to others who are ill with my symptoms and ONE of my diagnosis :).  i am so sorry to hear how ill all of you are and the frustration you all deal with each day.  thanks for listening. 

 

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Ann, Community Member
7/20/11 10:38pm

keep coming back...we are all here, posting info and offering support

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Terri, Community Member
8/ 7/11 5:53pm

Hi to fellow Primary Progressive MS persons,

I am not the patient but my significant "domestic partner" Tom is.  We just got back from Mayo, prev. at Johns Hopkins, trying to get a diagnosis for 3 years.  Mayo  is confident it is PPMS.  It is nice to get some sort of diagnosis but sad there seems to be no drug to help.  Tom is getting steadily worse..affecting primarily his left side (leg and hand) and he is starting to the "the feeling" on his right side.  He now has trouble mowing the lawn and walking any great distance.  He has long given up vball and running.  He is nearly 51 and was a very good athlete.  I would very much like to communicate with other sufferers of this disease.  I do not know what it is like to have the disease but I know it is very hard to watch somone you love have it.  Any support websites etc., would be very helpful. Thanks so much and God bless, Terri

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letsgonats, Community Member
11/17/11 12:00am

Terri, I'm 54 years-old and was diagnosed with PPMS about 10 years ago.  My ability to walk has steadily gotten worse since then.  I too was a pretty decent athlete until I was hit with this disease.  However, I haven't lost a day of work due my illness, and still hit the gym at least 3 days a week.  My wife and I also invested in a high quality elliptical trainer, which I use on the days I'm not a the gym.  In addition, I'm fortunate to have access to some great neurologists in the Washington, DC area.  These docs and I are not afraid to try different treatments, hoping to find that magic bullet.  So far, the only success has been in managing the symptoms but, unfortunately, not the disease.   So, here's my advice list:  1)  Stay as active as possible.   2) Join the local NMSS chapter.  I belong to the local chapter in Washington, DC.  The chapter sponsors an annual "Men with MS" day, which I always attend.   3)  Keep adjusting.   Get a  wheelchair if you need one.   Make the house more accessible.  4)  Be optimistic.  There's really no other choice. 

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goawayppms, Community Member
1/18/12 10:21am

gonats, I'm a 43 year old woman and have had PPMS since I was 8 years old. How can that be, right? I also live in the Washington DC area.  I wear Bioness devices on both legs to walk, get Botox injections in both legs every 90 days, take lg amts of Nuvigil to give me energy to walk and exercise everyday until I physically cannot exercise anymore. Everyday. I'm so afraid that if I were to stop the daily exercise my progession will increase. Talk about motivation! I'm interested in finding out more about the neurologists you refer to in your post who are not afraid to try different treatments. I have seen several neurologists in Bethesda and at the NIH, but none that really thought out of the box. I totally agree with your statement "Be optimistic. There is really no other choice." A positive perspective on PPMS can make your day become tolerable from intolerable. I have had PPMS for so long I do not remember not having it. I am married, have 2 kids (pregnant twice with PPMS but have 2 healthy kids) and worked up until 13 years ago as a senior accountant.  I will NOT allow this thing that has taken over my body to destroy my life.

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Pat O'Connor, Community Member
1/24/12 3:03am

Wow, I've had ccsvi twice with little improvement. I like your treatment-Bioness devices and botox injections in your legsSmile but I haven't heard of Nuvigil before? I have SPMS, am a single-mom with one child with ADHD. I think what your doing is great. Where did you hear about that treatment for MS and how could I get it.

 

Thanks, Pat

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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goawayppms, Community Member
1/24/12 8:56am

Pat,

 

I have researched ccvsi over the past year, but learned that the improvements were few and far between for patients with PPMS. The affected veins in PPMS patients are too deep and dangerous to remedy. The Nuvigil is my wonder drug in that it gives me energy and a positive attitude. It was prescribed to me over 10 years ago by my neurologist. Nuvigil is an updated version of Provigil. It is made by Cephalon. Without Nuvigil my life would be without any momentum. I highly reccommend it to anyone with lethargy associated with MS. Contact your neurologist in order to get a prescription. It is very expensive, Cephalon has a financial aid program for those who qualify. Hope this helps. Marie

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Pat O'Connor, Community Member
1/24/12 7:45pm

Thanks, I had one Neuro think I could be primary progressive another wrote down SPMS but I sleep all the time. I will talk to my neuro about Nuvigil or Cephalon. I walk with my walker and scooter.

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letsgonats, Community Member
4/ 2/12 6:56pm

Try the Neurologists at Georgetown Univ Hosp (GUH).  I started wearing Bioness on my left leg last year.  It really does help with drop foot, although it's more maintenance intensive than a foot brace (AFO).   My next experiment at GUH is to get Botox injections for my legs.  How is that working for you? 

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goawayppms, Community Member
4/ 3/12 6:46pm

Letsgonats,

Thank you for your response. I will contact GUH. I have been wearing the Bioness L300 devices on both legs for several years. I have not tried the L300+ system on my thighs, but I am in the process of trying to get it. The botox works well. The injections can be painful. Make sure you go to someone who knows what they are doing. My botox dr is in Bethesda and he is excellent. I don't know if that is too far for you to travel, but if you want his name let me know.

 

So within the last two weeks I started taking LDN (Low Dose Naltrexone). Anyone here ever try it?  I must say I am pleased with what I see. Not a miracle, but a definite improvement in the form of balance and coordination. Even the stretching and exercising seems easier (if that's possible). I take 4.5mg each night. Go to www.lowdosenaltrexone.org to find out more. And its relatively inexpensive. You have to get it from a "compound pharmacy" but the one I use in NYC is very responsive and seems reputable.

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Denise, Community Member
12/26/12 12:39pm

Terri,

I feel your pain! My husband (50 years) also have PPMS.  It is very hard to watch my hubby steadily decline and go through the physical and mental frustration of this desease.  My husband was very atheletic and now is not able to run and walks with a cane.  He is still trying to work and we are working hard at maintaining a life that is somewhat normal.  I try to be supportive but respectful of his wishes to continue his life as normal as possible.  I find I am his cheearleader and reminder of "time to take your pills."  Our neuroligist told him to keep as active as possible and we find that if he rides an exercise bike for 10-15 minutes everyday, it Wakes Up his Nerves and he feels it is easier to walk (for awhile).  You may email me anytime if you need a shoulder or just someone to vent to.  I KNOW what you are going through and am happy to listen.  My prayers.  Denise

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Cammie, Community Member
12/30/12 12:44pm

Hi Denise!

 

I am interested in talking with you about your husband's PPMS.  My husband was diagnosed about 4 years ago.  I need to run out the door right now for a basketball game but will check back later. 

 

Thanks,

 

Cammie

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Bopper, Community Member
6/10/12 1:03pm
I saw your post and I too was diagnosed with RRMS in 96. I worked until I was forced to retire in 12-11 after already being down for a year. I have been a prisoner in my home for almost 2 years caught between being able to walk or having a walker. Apparently my MS progressed to PPMS. Did the first ACTH injections right after I had my attack 2years ago and I came back better than ever. Though ok we did it again. Went back to work for a couple of months part-time and told them I'm ready to come back full-time. The very next day I was in the ER in so much pain in my neck and spine I was passing out. No one knew what was going on so they gav me dilaudid and that new nerve pain medicine and sent me home where I spent the next couple of weeks on the couch passed out on those drugs and I haven't been able to walk since. No Dr. Can tell me what happened. They just look at me when I explain the neck episode and say hum....So frustrated because there is no treatment and I feel caught in the middle of really needing a power chair but not willing to accept it. I guess it's my pride that's making me a prisoner. I feel like it I sit down in that chair it's over but at the same time I can't leave mt house if not. God I pray for miracles for us all. I think if your rich or influential you can get help now. Take Mitt Romney's wife for example. I see her on stage in heels walking around normal and Jen talking about how hard it is. It makes me laugh. She doesn't know what hard is. She won't tell what her treatment s. I've emailed her. All she says is I mix Eastern and Western. If it were just Accupuncture I think she would say that. So what is her treatment. She probably has PK treatments in that Auyervadic center in MA. that cost $5,000 every month. There are only 2 in the united states. The other is in Iowa but its not medical it's just a sa. The one in her state is for sick people. Who has that kind of money? Sorry for rambling just frustrated. Whenever I was always able to get back to work I always recovered with a little disability left but now I can't recover. Somebody needs to help us with this PPMS. Everyone gets there e entually. Thanks for listening. Frustration.... What is your situation like with your health? I have a 1 1/2 yr old Grandon and another on the way and I can't pick him up or walk with him or play with him and he doesn't understand. It hurts when I see my ex's wife pick him up and sling in around or my som in laws mom picking him up and playing and taking him to Toys R Us and I can't even put him in a car seat and drive. This is awful. We need some help. I believe just like someone else posted the cure is on a shelf somewhere. How long has it been since anything has been cured? Not since being sick became. Gold mine for Dr.'s, Insurance, and Drug Companies. We're so much more advanced than when we found the cure for Polio. We're not idiots. They have the cure but until we pay Dr,'s like mechanics we'll never get well. You pay a mechanic when he fixes your car. We shouldn't pay a Dr.till h fixes us. That's the way it's done in China. That's why it's so over populated and by the way no MS. What has our Country come to when it allows all this sickness and suffering. Reply
sps2045, Community Member
6/13/11 10:16pm

My wife has progressive MS and was scheduled to be  evaluated for a clinical trial for adult stem cell transplatation on may 18th but she started eating macrobiotically the day after Easter. When we went in for the evaluation she was no longer needing her crutches or wheelchair. She was still using her leg braces but was doing so well they said she no longer qualified for the trial.

 

The MS doctor said if she had not seen it with her own eyes she would not have believed that a macrobiotic way of eating would be so helpful.

 

At the present my wife no longer uses any support including her leg braces. She also does not require Oxygen and she no longer chokes when swallowing.

She is now able to drive again as well.Today we just got back from walking a mile and she still does not need any support.

 

If anyone is interested they can read about it at the Kushi Institute site:

http://www.kushiinstitute.org/index.htmll

 

 

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RatTaxi, Community Member
7/28/11 4:22am

I know I couldn't afford to do this. Are you saying your wife went to the Kushi Institute or that she went on a macrobiotic diet on her own? Their website is more informative about their prices, etc. than it is about what exactly it is about their facility that is so healing.

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sps2045, Community Member
7/28/11 5:39pm

Jenny said to send her an email with your phone number or skype account and she can talk to you about it.

She did go to the Kushi Institute to learn how to cook macrobiotically but the important think is that you have to learn somewhere how to do the cooking.

 

steve6754@aol.com

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sps2045, Community Member
8/ 9/11 11:40am

Do a web search for the word macrobiotics and you will find many web sites explaining the type of food that you can and cannot eat. There are also sites that talk a little about remedies for people with MS. Search for Multiple sclerosis and macrobiotics.

I gave the url to the Kushi Site because you could read the testimonials from people with cancer, There are no testimonials from people with MS and this is why Jenny will go there in October to give one.

 

Steve

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sps2045, Community Member
8/ 9/11 11:41am

Do a web search for the word macrobiotics and you will find many web sites explaining the type of food that you can and cannot eat. There are also sites that talk a little about remedies for people with MS. Search for Multiple sclerosis and macrobiotics.

I gave the url to the Kushi Site because you could read the testimonials from people with cancer, There are no testimonials from people with MS and this is why Jenny will go there in October to give one.


Steve

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marichik, Community Member
9/29/11 1:10pm

Thank you so much for the information, I am going to look into it. My husband has MS for 10 years. He started to progress now. We are actively looking into Stem Cell. I have contacted several places. No I have to nerrow it down to one. I will let you know how we are doing. Good luck to us!

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marichik, Community Member
9/29/11 1:11pm

Thank you so much for the information, I am going to look into it. My husband has MS for 10 years. He started to progress now. We are actively looking into Stem Cell. I have contacted several places. No I have to nerrow it down to one. I will let you know how we are doing. Good luck to us!

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Kelly, Community Member
10/ 7/11 4:18pm

Hi I am new to this site. I am a 49 year old single mother. I was diagnosed 3yrs ago and now have secondary progressive. There seems to be no options for me. how can I find out about stem cell or LDN. Or is there anything else out there?

 

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sps2045, Community Member
10/ 7/11 4:30pm

Read my comments on macrobiotics

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Donna Jo, Community Member
6/17/08 12:52pm

Shelley

 

I smiled when I read your cheesecake comment!! ( I love cheesecake by the way) Cool

 

I think what I need to do is reach out to others and ask questions!

( I mean others that have MS not health care ppl).

 

I just get frustrated sometimes when I feel 'alone' in my quest for answers. Maybe a retreat gathering at a Ranch would be a neat way for people to get together..hmmm.. now thats an idea.

 

I will continue to 'do what I do' and do it with a smile on my face the best I can.

Donna

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Trea, Community Member
7/ 3/08 9:03am

Hi Donna!

I was just surfing the net for any kind of new info on pri-prog ms and I came across your question.  My mother-n-law has pp ms and has been on just about every kind of med you can think of.  I have watched her for 15 yrs, trying to come up with something that works.  And this is what I have concluded.  First of all, doctors will put you on anything and everything.  Why is this?  In her case, I believe it is done to give some kind of hope...but what has happened is she is almost broke from paying out muchmuch $$$ on the different kinds of treatments (I have a prob with the partnering of doctors and pharmaceutical co.s).  But physically, nothing.  She was just told last week that they were taking her off Tysambri (thank God!) after having injections for over a year.  ONce again, no substantial claims that this med helps pp ms, but the doctor is pacifying her mental need for medication.  SO DANGEROUS!  How do we know the med is not working?  Her brother had the same type ms and never took any type of injectible drug and his rate of progression was the same.  Sooooo...in drawing conclusions, I and my husband (her son) have begged her to not waste her disability check on the needless round of drugs.  Her best bet was (and is) physical therapy (keep the muscles working), rest, and if one feels like they need some type of therapy, then try the natural way (ie bee stings, flaxseed oil, oxygen therapy-used often in UK).  As for the doctor's bedside manners, she has gone through the same.  I believe the prob is they just don't know what to do....

I WILL be praying for you and for those dealing with this disease.  God is walking with you.

Trea

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ciaralee, Community Member
10/30/08 7:34pm

My dad was diagnosed with primary progressive MS 14 years ago. He was told at the time there was no hope or treatment and he would be in a wheelchair within six months. He didnt give up and fought the disease. He went for walks and defied verything the doctor sadi was possible. Trust me I seen him climb the steps of strormount in belfast, fighting his body with every step until he reached the top. It was seven years later that he had to go into a wheelchair. Hell of a difference than six months! Even now he cannot do much but he is independent. He still fights and struggles everyday and  lives his life not the disease. I have seen younger fitter people with MS stop fighting and they have deterioted so quickly before my eyes. Men and women as young as 25. My dad is happy and laughs every day. He goes out to volunteer and teach people with reading difficulties twice a week. Every day for him is a battle but he keeps fighting. That is the key - Dont give up. Keep on fighting and dont let the disease control your life. Go the the MS society and get involved - you will meet other much worse off then yourself and feel lucky. I have cared for my dad the whole way through and I feel the frustration and struggle he faces evry day. But trust me - IF HE CAN DO IT SO CAN YOU! xx

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Steve, Community Member
12/26/08 2:28pm

Dear Donna

I was diagnosed 6 years ago with PPMS. I have done extensive research (I am a lawyer, but work as a research professor), and it seems to me that there is no clear medical intervention that exists to control, or delay the onset of PPMS and it's symptoms.

 

I have concluded that anit-viral drugs may help. There has been recent research on the linking of the HPV9 virus - i.e. the common chicken pox and shingles virus,and MS. The theory is that the HPV9 virus is a very similar molecule to the molecular structure of the melalin which acts as the insulating sheaf for our nerves and, as such some of us who have HPV9 (and most people do), have our own white blood cell system attacks the molecules of the melalin rather, or as well as, the virus molecules.

 

This work is still in the early stage, however, I did not have chicken pox until I was an adult (in my mid-30s), and only after did I start to get a variety of symptoms which on relfection were related to MS. Since having been diagnosed I have had numerous bouts of shingles. What happens is that I start to feel rather poorly because of the MS, and as this progresses about 3 weeks into it, I come out in shingles. It has taken a long time , but when I finally persuaded my doctor to give me anti-virals for the shingles, my MS symtoms got some relief. They never leave me, but there are some 'better' times as well as the bad times.

 

I have done my best to continue as normal (but the symptoms, which have included reduced mobility, pain, reduced sight, deafness, difficulty passing urine and faeces, and fatigue have progressed to the stage where though I still work fulltime, I do it on a 'wing and a prayer' and I am very reliant on a workplace system where nobody makes a decision about anything - including me. However I have found that time with my family has really suffered, between trying to keep abreast of my work and managing the fatigue.

 

I cannot give a great deal of hope - but continuing to use the stairs has helped considerably with keeping me on my feet, a strict stretching routine has helped reduce the worse aspects of muscle spasms, and my medication has also helped reduce the pain and the symptoms. I take 200mg Tramadol twice daily for general pain relief, 150mg Pregabelin (lyrica) twice daily for neuropathic pain relief, and 200mg nefazodone (an anit-depressant) twice daily initally for headache relief but also now as an anti-depressant.

 

Things are not perfect - but then life isn't like that, but we have just had a wonderful christmas together as a family, I even ventured a couple of hundred yards from the car to feed the ducks - and though it was a struggle to get back, it really lifted all of our spirits. I would not want to give MS to my worst enemy, but it doesn't have to be taken lying down. Take the medication - so what if you become addicted - better that than suffering for the rest of your life, and accept that though remissions are rare, they can sometimes happen - maybe only in one small area, but they do. I have just recently rediscovered colour, I was seeing everything through a grey veil, but 3 weeks ago it lifted and I am going around looking and remembering the feelings that colours bring with them. That way when I next can't see them again, I will still know they really do exist. 

 

It is your attitude that matters - you won't be cheerful all of the time, but you certainly can be some of the time, and remember it isn't just about you but also about your family and loved one's  - they are also greiving for the life you expected to have, they also need your help to manage this.

 

Good luck and keep your chin up

Steve

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JESSICA, Community Member
6/15/10 9:57am

HI DONNA, STEVE IS RIGHT YOU HAVE TO KEEP Laughing BUT NOT ALL THE TIME WE ALL NEED TO CRY AND IT FEELS GOOD SOMETIMES TO GET OUT THAT GOOD CRY. I'M SURE U KNOW WHAT I MEAN I AM A 45 YR OLD WOMAN I WAS 29WHEN I WAS TOLD I HAVE MS(PPMS)  AND TRIGEMINAL NEUROLIA,LUPUS THEN I GOT A BONE DEASE FROM THE WHOPPING DOSES OF WHAT DR.'S CALL OUR FRIEND CALL STERIORDS. NOW I HAVE A 4"X3" PLATE AND 4 SCREWS IN MY LOWER BACK I WAS A ROOFER FOR 20YRS IWAS IN GET PHYSICAL SHAPE. THANK GOD I WAS IF I WAS'NT I WOULD HAVE BEEN IN A WHEEL CHAIR LONG AGO I MISS THE OLD ME BUT I CAN'T DWELL ON THAT ONE GOOD THING THAT GETS ME THROUGH ALOT IS LAUGHTER I LOVE TO LAUGH IT MAKES THING GO A LITTLE BIT SMOOTHER. THE ONE THING I HATE IS WHEN YOUR IN A WHEEL CHAIR  OR USING A WALKER AND PEOPLE ASK HOW IS MY MS DOING I I TELL THEM I HAVE PMS AND THE DRS JUST HAVE'NT REALIZED IT YET LOL I HOPE THAT CAN GIVE A SMILE Wink BUT I UNDERSTANT EXACTLY HOW YOU FEEL BUT HANG IN THERE AND JUST KEEP DOING WHAT YOU KNOW BEST FOR YOUR BODY THE DRS DONT KNOW YOU LIKE YOU DO! SO YOU NEED TO DO WHAT YOU FEEL AND THINK  IS THE BEST WAY IS FOR YOU AND YOU HAVE LET THEM KNOW THAT WHEN YOU THINK ABOUT IT YOU PAY THEM SO THAT MEAN THEY WORK FOR YOU!! SO YOU STAND YOUR GROUND THEIR NOT ALWAYS RIGHT WHEN IT COMES TO KNOWING HOW YOU BODY FEELS  I HOPE THIS HELPS AND PLEASE REMEBER LAUGHTER REALLY IS THE BEST MED WE HAVE            GOD BLESS.     JESSICA

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Patty, Community Member
11/ 2/10 11:34am

Hi Steve,

I am not a researcher, but have done some googling, and found several medical journal abstracts that make me believe there may be a natural process to at least stop, if not reverse PPMS. 

 

My husband has been dealing with an Fevers of Unknown Origin (FUO) which turns out to be an over active immune system since 1979.  After 2 visits to Mayo and no real understanding of what is going on, he had signs of Vssculitis so the Rhumotologist began treating him for that with the immuno suppressents and such.  That was in 2000, in 2002 a friend told me about Colostrum, we saw an oncologist that said "give it to him, it is mother's milk, it can't hurt" and things have really smoothed out.

 

So 7 months after I began experiencing this "electrical impulse" going from my neck to leg, I began taking the Colostrum myself.  Finally in August I took time to go to my family Dr. for a physical to tell her about it.  At the appt she mentioned MS and ordered an MRI of my neck to check for a bulging disc. 

 

Duiring the MRI they pulled me out to switch to a "IV contrast" MRI because they saw an "MS plaque" on my spine.  the tech said it did not "light up" as an active MS plaque, and said they'd probalby have me come back ...they did.  The MRI showed more lesions on my brain.  The Neuro said they were "classic MS" lesions and wanted to do a visual evoked response test.  about that time I began taking Epicore - an imunne modulator, much like the Colostrum.  The results of the visual test was as the nurse put it "your optic nerve is stable".  Whatever that may mean.  I wonder if my immune modulators has "deactivated" the demyelinazation to show this.

 

I am wondering if the immuno modulators, with enzymes, with something to rebuild myelin might be a "cure for MS".  I've tried contacting the lab that did the research for the Epicor their website is www.4greathealth.com .

 

As I shared I've been seeing medical journal abstracts that talk about disolving scar tissue, and some with MS seem to be having some success with them, modulating the immune system to as I think of it "stop the t cells from munching on the Myelin Shield.  I'm thinking if we can do those 2 things, plus take something or eat a proper diet so the body can rebuild myelin that some may be able to get ahead of the PPMS. 

 

It seems that maybe MS is a tag put on a variety of symptoms, and that may be why some can go years with no setbacks. 

 

It is encouraging to hear you have had such a good 6 years.  If you know of anyone who might be interested in researching or pointing the way for me to research this I'd be appreciative. 

 

My Nuro has not put me on any meds, however I don't know if I would take the steroids as my family physcian had warned me that due to my long term complaints of my vision it has caused blindness and she would not recommend my taking at least one of them.

 

I apologize for such a long post, but I really think I'm on to something, as so many have done parts of my theory.

 

Patty

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Charlene Boone, Community Member
12/30/08 1:10pm

Donna,

My name is Charlene Boone....my husband Mike was diagnosised December 19th 2008 with PPMS...this has been 4 years in the making....he is 45 years old and the love of my life....I see his hurt and frustration...as of now he is having problems with his left leg....spasms..etc..he also has A typical trigeminal neuralgia...in the left side of his face..I read Steve's comments and this is what are medical regime is going to be...live each day one day at a time and keep him active...thank goodness he already was...he loves to play tennis and this is the one thing he will miss...but I'm telling you...he will be on the courts come Spring....

Your friend,

Charlene

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Randy Thompson, Community Member
10/25/10 4:32pm

Donna, My name is Randy Thompson and my wife Donna also has PPMS with the trigeminal neuralgia.  The trileptal that she took for the TGN made her drowsy and weak.  Can't say much about the treatment for the PPMS.  But, my wife has had a Gamma Knife procedure for the TGN with some initial success - Pain relief lasted about a year.  She is now lined up for a Cyber Knife procedure.  The Cyber Knife procedure is just like the Gamma Knife procedure - But, less invasive - No skull pins or halo.  Both procedures are essentially the same - The trigeminal nerve is iradiated with gamma rays - No cutting or surgery per-se.  We were told that the procedure could and has eliminated the TGN for many patients and for some the procedure may have to be repeated.  The procedure is usually done by a neurosurgeon and a radiologist.  It's someting that you and your husband may want to look in to.  Randy in Fountain, CO.

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Paula, Community Member
1/25/09 10:42pm

Dear Donna,

 

I don't know where you live but my husband was diagnosed with PPMS in June 2005 - he probably had the disease between 10-12 years.  It started with unsteady gait and problems lifting his left leg.  After visiting three doctors in NY, we were lucky enough to find Dr. Saud Sadiq at the International Multiple Sclerosis Management Practice in NYC. My husband has received intrathecal (given in the spine) methotrexate - my husband says it is painless.  He was also given a drug called 4-AP for fatigue and last year a long acting form - Rifampen XR.  It has made a very big difference in his fatigue level.  He works full time as an operating engineer (heating and air conditioning) and although he continues to have problems with his gait and he walks with a limp, he does not seem to be progressing much.  I would like to think that the methotrexate is helping.  Dr. Sadiq has two associates who are equally competent and empathetic.  His number is 212-265-8070. Even if you are not in the New York area, maybe they can steer you in the right direction.  I hope that you get some answers to this frustrating and unpredictable disease.  Good luck and I hope this was helpful.

 

Paula S. 

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Maryam, Community Member
5/18/10 4:48pm

Hello Donna and others,

 

My husband most likely has PPMS. The MRI results were given to us a few weeks ago. He had just done a spinal tab and we are waiting for the resutls.

Your notes are all hopeful. As we have two little kids and I have only been crying the past few days.

 

I just passed the Dr. number  and the medication your husband has used in NY to my husband as he is good as doing research. I just hope this can be our answer.

 

Thanks all and love reading the notes for all of you.

 

Maryam

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Maryam, Community Member
5/18/10 4:56pm

Paula,

 

How is your husband now? I am really anxious to find out more about this medicine.

 

Thanks,

Maryam

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Paula, Community Member
6/15/10 10:35am

Maryam,

 

I am sorry I didn't get back to you sooner - somehow I didn't see the email!  Mike is pretty stable and is still on the methotrexate.  He is also going on ampyra (which is the same as 4-AP - which he will discontinue).  He is working full time, his gait remains about the same and he is not really complaining about fatigue too much - in fact, I think he has more energy than I do at times!  I hope that this is helpful to you - I know how discouraging everything about PPMS is - it was terrible to read but I am very grateful for the help of Dr. Sadiq and is staff - he runs an amazing practice and I always feel hopeful when I leave there.  I hope that your husband is doing well-it's certainly not an easy road.

 

Paula

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Shirley C, Community Member
1/30/09 12:11pm

Hi:  I came across this site after trying to find more answers for PPMS.  I was told I had it in Nov 2008.  I am 56 years old.  Ten years ago I had an MRI done, because something happened that resembled a stroke,  and there was nothing.  I've spent 10 years trying to get answers, and got extremely frustrated. I found you have to help yourself.... I don't have a lot of faith in the medical system. (I live in Canada).  I finally asked a doctor in the area I now live to refer me to another neuro.  He did and that's when I was told.  I got a 2nd opinion, and was told I "wasn't bad enough" to participate in a new trial that was for PPMS.  That just made me feel great !   And this was in an MS center, by the head guy, in a major city in Canada !   I've researched on my own and found a great book called "The MS Recovery Diet"  by Ann D. Sawyer and Judith E. Bachrach, they were both MS sufferers.  And the other book is by Dr. Barry Sears called "the Anti-Inflammation Zone".  This was recommended by the GP who referred me to the neuro.

They are both worth reading.  This GP has done Omega 3 tests (you do pay for this) and these are sent to a lab in Guelph, Ontario ( the only one in North America) and they determine your inflammation level and that determines how much Omega 3's you require.  I am doing everything naturally, as they basically told me, you have PPMS, there's nothing we can do and there is no medication available.  Of which I'm glad, because that just band-aids the situation. 

 I have changed my lifstyle, (being retired helps regarding time) excluded all foods that can irritate inflammation, gluten, dairy, eggs, and my biggest culprit sugar.  I was told of someone that through naturopathic and homeopathic and food and lifestyles changes, went from 30 lesions in the brain to 2 (in 2 years)...Fatigue hits me in the evening, and I sound like I've been drinking...I had worked for a telecommunication giant for 15 years, during the last 5 years this started to surface.  I was an actress, dancer, and was beginning a voice over career, when this happened; so I retired early when a package was offered, reconnected with and married my high school sweetie in 2006, (after 30 years apart) and have begun a career doing genealogy...I don't have to talk...  I take B vitamins, B12, D, E, plus a very good multivitamin, mineral complex, and fish oil, because most people with MS are low in DHA's and EPA's (omega 3 essential fatty acids), and I walk daily......I'm not a sports person, I used to ride horses, but I haven't tried that yet.

 I hope this helps and encourages others to fight for yourself, because no one knows your body better than you and that there are questions that need answering.

 I am also very thankful that my husband is very loving, supportive and we're together "no matter what"..Here's to everyone :)

 

Shirley

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Steve M Bishop, Community Member
9/25/10 2:30pm

Hello Shirley,

 

Thanks for the comments. I wanted to inquire if you are still on the diet?? If so, how long was it before you started to notice any difference3?? I just turned 52 in July and was just diagnoised with MS back in May but know it has been coming on for at least 4 years based on when I knew things were changing. But my wife and

I have done a lot of research as well and found drugs, therapies are not really the answer, especially for PPMS. So we have also bought and read Ann's book and Dr. Swank. Now for 2 to 2.5 months have been on a very strict diet, but wondered if you could help me at all with what you've found or learned?? I look forward to hearing from you. Thanks, Steve B

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Sammi, Community Member
9/25/10 7:21pm

Hi Steve:  Nice to hear from you.  I am still very careful about what I eat, like eating natural (organic) but so much has changed since 2009.  I got handed a card from a co-worker of my husband's, and all  it said was:  Google LDN, Joseph Wouk.  I did and watched the youtube video that Joe did.  He has the rare kind, progressive relapsing.

So I started researching low dose naltrexone, emailing with Joe on Facebook and gave the info I found to my Dr.  and being very open minded, gave me a prescription and I've been on it 1 year.  It does stop PPMS in its tracks!  The fatigue is usually gone in a day. Two websites to check out are:

www.lodosenaltrexone.org   and Sammy Jo's   www.ldners.org   If you have any questions she will answer you back.  She did for me.  I found when it came to PPMS, there was really nothing out there and the medical field didn't seem to be interested at all.  I am currently moving from the north of Ontario, back to the Toronto area.  The prescription has to be done at a compounding pharmacy, I use Smith's Pharmacy in Toronto.  Cost is about $55 CDN a month.  It needs to be 4.5 mg to work for PPMS, and not in liquid form but capsule.  You take it just before you go to bed and I found it helps with sleep.   My son who has colitus, takes it as well.

Where are you located, if you don't mind me asking?

Take care and keep in touch

Shirley (aka Sammi) 

P.S.  Joe is the son of author Herman Wouk 

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Steve M Bishop, Community Member
9/25/10 9:33pm

Hello Sammi,

 

thanks for the quick reply, we live in Hudson Michigan, USA. Did you have much success with the diet before finding and trying the drug you mentioned?? Now that you are on this medicine do you still adhere to the diet?? It seems as I read about PPMS the normal therapies do not have much use or affect, would you agree?? I am not really for the therapies they suggest which seem questionable at best. I believe if we keep the body healthy it should help, it makes sense. Course this medicine you mention certainly sounds interesting. I am open to things that work to be sure. I look forward to any more you can tell me or help me with.

 

Much thanks and appreciation, Steve B

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Mary D., Community Member
10/ 6/10 1:37am

Hi Shirley.  I was diagnosed with PPMS February 2000.  After having a major illness bout in November 1999.  I could't walk without pain and my body had curved over with severe spasms.  My primary doctor gave me neuronton which I took for a year. It really helped.  I went on Avonex injections for a period of approx. 6 years. I no longer take the injections.  My progress was slow.  I fell broke my hipbone and afterwards progression increased.  I now use a walker.  I have heard a lot about LDN and was told that "it really works for people who are PPMS.  My MS is on the left side of my body.  Including arm, hand, leg and foot.  I have what they call lawm mower gait or foot drop.  I live in Southern California and would like to try the LDN.  Do you know of places in Southern California that would Prescribe this medication.  My doctor will not prescribe this for me.  Also, I will need a compounding pharmacy.   Thank you for any info you can provide.

Stay positive.  Mary

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DonP, Community Member
2/18/11 4:42pm

Hi Sammi/Shirley, I am from Northern Ontario (North Bay area) and was wondering where you lived and if it was close.  My PPMS is progressing very quickly and I'm looking at all options including LDN.  Did you have a pharmacy in the north that could/would dispense the LDN (compounding pharmacy?).  Thanks for the post.  Don

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Maria M, Community Member
3/30/09 12:35pm

Hi, I have secondary progressive MS and found this by looking up Dr. Sadiq in NYC who is my Dr. I LOVE him and his staff. I was dx 12 years ago, and have been to many neuro.'s....2 are also "top" guys. This is the 1st time I feel like I am actually being treated for MS. Sadiq is all about communication and using a treatment that fits the person, not just wantonly trying things. I've done all the injectables, Tysabri, IVIG....

I had problems with them all and was labeled as a "difficult patient". I followed Tysabri since the research and even bought stock in Elan, so I wanted it to work too more than they. This attitude from the Dr. just exacerbated the issues I already have of being a "hypochondriac" in my family....this from my father the Dr. too. I have said that my symptoms started when I was a teenager and no one believed me. Even after several severe flare ups, no one believed me. After my initial 2 hour visit w/ Sadiq, during the 2nd 2 hour follow up visit Sadiq had gone over all the my information, history, MRI's, etc. and agreed that my MS began after a bout of mono at 15. He gave me his cell # and told me that when I think it's silly to call him, that's when I should call. I now have a "team" at his center. I have a Physical Therapist that is nothing short of amazing, a cognitive neurologist, a counselor, a naturopath, and an incredible, compassionate staff. When I was given a rx to have a second urinalysis done locally (i'm in nj) and was too sick to get there right away, the office called me because they had called the lab and they didn't have results for me. They don't let me slip through the cracks and are kind about it. Having cognitive/memory impairment, this is a real asset for me. 

 

One thing that has come up is diet. I am working with the naturopath on that. One thing Sadiq told me is that everyone who has MS is vit. D deficient. I was deficient in D and B12 (even though I inject b12 every month). Now I take 1000 mgs of D and inject b12 weekly and then we will retest. I had my first intrathecal methotrexate treatment and so far no noticeable changes. Sadiq just wants to try to lower my immune cells in my cns which were way over 30,000.....a high normal, I believe, is 10,000.

 

The cognitive neurologist referred me to a research program for cognitive impairment at Kessler Institute and will be able to use the testing info for my treatment, which avoids having to endure another long testing process, while at the same time contributing to the exploration of finding a way to remediate the cognitive impairments in MS. I also get see functioning mri's of my brain which I just think is cool. I'm a geek for that kind of stuff.

 

The physical therapy doc has referred me to a vestibular specialist also at kessler, and believes that he can help improve my balance issues. Luckily the two things I love are great therapies for MS......yoga and hippotherapy (pt on a horse). 

 

Hope maybe something in this little bit of my story is helpful to someone.

 

I will close with one of my favorite quotes....
" Strength is not physical endurance, it is indomitable will." Ghandi

 

Best,

 

Maria 

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kristy, Community Member
4/25/09 7:57pm

Hi, I am sorry to hear about your MS.. My mom got dignosed with ppms about 2yrs. ago. She went from walking with a cane to being in a wheelchair in about 1 yr. And I think that was because she gave up on herself and had no hope. She tried all nautral medicine, it didn't make a difference. Her doctors at the Cleveland clinic then had her do chemotherapy, she got much worse after that. Right now she is in a home so they can do alot of physical therapy with her. Hopefully she can come home soon, but I am also constantly looking for something that might help her, it is a tough road. I guess the moral of this was to keep your head held high and be positive, because I feel like thats why my mom is as bad as she is....God Bless you, I wish you well.

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GEMM, Community Member
4/29/09 5:50pm

DEAR DONNA JO

I WAS DIAGNOSED WITH PPMS 2001, I AM NOT ON ANY MEDICATION, I DO TAKE LOTS OF VITAMIN AND SUPPLEMENT, I DO YOGA, AND SWIM, I HAVE GOOD DAYS AND BAD DAYS, STRONG ONE SECOND AND CAN'T LIFT MY LEGS NEXT SECON, BUT I TRY TO STAY STRONG AND FIGHT AS MUCH AS I CAN, ALSO WATCH YOUR DIET AND CHECK INTO SWANK DIET.  I WISH YOU AND EVERONE WITH THIS DISEASE WELL AND PRAY FOR A CURE.

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David Madison, Community Member
4/30/09 10:23pm

The doctors initially diagnosed me with Relapsing Remitting MS, but they had misinterpreted the rapid progression as a relapse.  After discussing it with two neurologists, they changed it to Primary Progressive.

 

I diagnosed myself with MS four years ago at the age of 51; a tingling in my fee would not go away.  After two weeks, I knew what I had.  My mother had MS the last forty years of her life, so I knew what it looked like.

 

I used to be physically active as a factory laborer, setting a company record in 2000 for lifting 80,000 pounds in a 12-hour shift.  Today I am bedridden; have been for a year.  I tried to attend an MS convention in Atlantic City two weeks ago, but the wheel chair overturned at the front door.  The EMT's got me back inside, upstairs, and back in bed.  I gave it my best shot.

 

Today I just write about astrophysics and astronomy, maybe 700 essays in the last couple of years.  By now, the collection of images that goes along with them is big.  I do not think about MS much, but after reading the posts above, I realize that I need to pay serious attention to diet.  injectable drugs do not have any effect except to consume $23,000 a year.  There are none tailored for Primary Progressive; I take them in hopes that they might keep me from getting worse later.  Considering how fast I have gone South with them, it is now reasonable to say they do not work.

 

Well, it is time to get back to writing.  Contact me if you feel like talking.

 

David Madison

Pennsylvania, USA

(610) 792-3189 Home

proplyd@verizon.net

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Marlen, Community Member
5/ 3/09 10:16pm
Hi Donna, I was diagnosed PPMS in 2004. Although I have poor balance, weakness of my left leg and fatigue, I feel well. I`m still workking full time as a professor in gerontology. One of my colleagues, a biochesmitry PhD and researcher recommendde me to take daily the following: vit B complex, omega 3,6 and 9, acetyl carnitine, CQ 10 and DHA. All of this medications are naturall and improve brain neurotransmissors. I visited many doctors since 2004: Dr. Kenneth Jonstso in Baltimore, Dr. Howard Swibel in Miami an Dr. Jeffrey Cohen in Cleveland. All of them confirmed the diagnosis of PPMS. Apatently, it is a benign form. Dr. Cohen is making research with galatimer acetate (Copaxone) and PPMS with promising results. I hope that you can benefit of this informatios. Best, Marlen from San Juan, Puerto Rico Reply
norrie mcniven, Community Member
5/15/09 7:41am

I appear to be in group as Donna with all the same problems I was diagosed at 49 years old,not actually being what of ms just you have a problem.Everything seems to be slowly stopping me doing the ordinary day to day things,although I can still work two days a week(just).Only check the web occasionally.Looks like its a long slow haul,hopefully something will break soon in the cure department inthe near future

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just2tired, Community Member
5/21/09 6:33pm

Donna, I was diagnosed with RRMS, but my primary physician and I both think he is quite wrong, as we both feel it is either primary or secondary progressive.  I never have a day with old symptoms and new ones pop up frequently.  As I also have severe Fibromyalgia and Arthritis, I am on opiate pain medication but I don't take any of the MS drugs anymore.  Could not afford them.  They did not help anyway, my lesions continued to increase.  Aside from the pain meds and stuff, I take Vitamin D, get in the sun as often as I can without overheating, tanning helps a lot, I color (yes color) to relax and that helps the pain, and my husband gives me Reiki treatments every day.  I take Melatonin to help me sleep.  I do know that when just as you think you have the MS figured out, the MS rears  its ugly head with something new.  Keep researching and asking questions, educating yourself is the best thing you can do.  And one of the guys that answered is right: a good attitude goes a long way.  I figure that I have MS for a reason, and I have learned many things sinced being diagnosed.  I have also tried to help people locally (very rural area) who have MS too.  I know I learn life's lessons with it and so do the children and grandchildren.  So I know I am fulfilling a purpose.  Just wish it wasn't so painful! lol  Hang in there!

 

Blessings,

2tired

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Kate, Community Member
7/17/09 8:39am

I have primary progressive as well and as far as I have seen unfortunately they don't know what to do for us.  I was a runner, mountain biker and skier.  I was diagnosed when I was 28 but we didn't realize it was primary progressive until years later because the symptoms were so slow to progress.  I am now 41.  The best advice is continue to live your life to the fullest because you can't get these days back, eat a healthy diet, and stay active.  Once you start losing your muscles it is very difficult to regain.  I have tried every MS drug available but am now trying to do a more natural route and cleaning my body of all the drugs.

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Donna Jo, Community Member
7/17/09 10:15am

Yes I agree with you 100%.

I am constantly researching and trying new things. I find that getting

Vitamin B12 injections really does help. I notice by the 3rd week that is

when I start needing to nap again in the aft. Interesting huh!

 

I just had botox injections in my hamstring and calf to see if it

can help with the spasticity. Time will tell~~

I know that I need to clean up my diet ..I'd love a guideline but everyone

does have different opinions and we just have to do whats right for us .

ps:  I still do triathlons and 10k races in my dreams!!  its weird-

I am running along (in my dream)  and then I realize that hey I can run again..

what a neat feeling.

I dream like this quite often. maybe one day it will come true

 

Cheers  and hope you are enjoying your summer

Donna

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Theo, Community Member
7/25/09 8:06pm

Hi Donna,

 

I have PPMS, I am 48yrs old living with it for about 8yrs. Do what you are doing and don't give up with things. Make sure your family helps you to.

 

Theo PS There will be a cure very soon?

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Jo, Community Member
8/10/09 4:37pm

My husband was diagnose with ppms today... We knew he had MS but didn't know what type.

 

He is 64 yrs of age.  Had a fall (he was an ironworker) about 12 yrs ago.  They had to rebuild his foot... So his limping causing disk deterioraton was not in question.  What I questioned was him loosing feeling in his leg after a couple of drinks starting about 6 yrs ago.  I knew this had nothing to do with degenerating disks and told him to go to his doctor and tell him... You're not going to believe this but the doctor said... if this only happens when you drink stop drinking!  I was shocked... we are talking about a social drinker not an alcoholic... Plus why would a couple of drinks cause his leg to go numb... I've been on his case for a number of years to tell his doctor he wants MRI's .. complete... head to toe!  His doctor knowing I'm in the medical field too quickly set things into motion.  From two years to today... after many X-ray, scans.. MRI's with and without contrast we have our answer...  I know what you're thinking.. why didn't I go ahead and proceed and just do something on my own and get him to the specialists he needed to see.  You can take a horse to water but you can't make him drink... He wouldn't listen to me...  

Now... knowing he has ppms... which is only effecting his legs... without alcohol now... I wish we knew the answer on how long before really deteriorates... He can't walk a block without a cane.. Can't go into a mall unless he's pushing a shopping buggy.. His pride has stood in has way for so long... But now he wants answers.. He was told there is no cure... we know that.... But no treatment either... Just live with it.. When he asked how long it will be before he's wheelchair bound... ballpark it... It was a shrug.... I don't know. 

Can you tell me please.... since you were diagnosed when did you start to see a steady decline in your condition...  One that you were aware of like.... hmm.... A month ago I could do that, now I can't?  Is this the way it will be?

 

I know this is so long..... but any information you send my way we will greatly appreciate...

Thank-you in advance..... Jo & Ross

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Charlene Boone, Community Member
8/19/09 12:01pm

Jo & Ross

Hello I'm Charlene and my husband Mike (age 46) was diagnosed Dec. 2008 with PPMS...In a nutshell my best advise is to not worry about WHAT MAY HAPPEN...but live life day by day....just know that if he doesn't feel like doing something or going anywhere don't...BUT Ross you need to push yourself as much as you can....join your local gym or YMCA...exercise...exercise...is the key...and diet.....As a wife I truly understand it is hard for you to have to fight this disease everyday....and you do...DON'T let it get you down...you are young enough to fight this...and you are in competition with PPMS...my husband fights everyday at 46 years old....and JO as his partner and wife you FIGHT TOO!....understand when he is tired..fatigue is the major part of PPMS....Mike and I enjoy our time together just watching a good movie or TV show....I'm 54....so God knew when he put us together (15 years ago in Oct.) that I would be in menopause (haha) and Mike would have PPMS...Just remember it is the QUALITY not QUANITY of time we have together.....

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Jo, Community Member
8/20/09 1:53pm

Hi Charlene,

 

Thankyou for taking the time to answer my question.  His PPMS is in his lower extremities only... He's not fatigued!!  

 

I question the diagnosis.......  His fall in 95 was a terrific blow to his body..  Landing on his feet...  He was in intensive care a day afterwards entering the hospital with multiple breaks and was in a life threatening situation. 

Over the years due to the re-molding of his foot... As they said, they were working with what looked like a fried egg... having to take some hip bone to help sculp a new foot.  Over the years the wear and tear of his gait causing his spine to deterioate has caused this definite tilted walk.  The only thing I was suspicious of was the fact his leg went numb after 3 or 4 beers... I knew if he had a pinced nerve his leg would be numb all the time.  I've looked into it and it seems trauma doesn't cause MS... at least they seem to be on the wire about this... Either way... he has absolutely no other symptom of MS.... no fatigue, pain, etc.... only the numbness when he has a few drinks (social)...

I'm questioning even though he's had all the tests.. gone to two specialists..  one is a MS specialist... does he really have MS....

His next appt. I'm going to look at the MRS scan and look for the dark mass they are talking about in the brain... From what I read... a dark mass without white spots is ppms.... with spots...rpms....  I was told his was completely dark... 

I'm going to delve deeper into this and find out where in the brain this is seen and what that mass in that area effects...

 

I maybe in denile but better to go with my gut feeling and find out for sure than live with the suspicion he my not have ppms...

 

Once again.... thank-you for your response...

Jo

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billw_willy, Community Member
11/21/10 5:14am

Jo,

Wow, dark mass lesions = PPMS and white lesions = RPMS? Two weeks ago a new neurologist-ophthalmologist at the VA looked at my MRI and said PPMS, one I had researched earlier, dismissed and assumed only white lesions meant MS and I had none of those. I had fallen many times, fractured my fibula in right leg 1990 and in 2006 fell again and fractured the 5th metatarsal at my heel. My 40+year story is a long one, all the usual bizarre symptoms.

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anne, Community Member
7/26/09 10:36pm

Hi,

 

My dad was diagnosed with PPMS in 2002 and they said he probably had it for about five years before. We live in Canada and the doctors don't seem to help. My dad has gotten worse over the years and its very hard on the family. We made contact with a doctor in Houston at the Multiple Sclerosis Baylor Clinic and the doctor requested files, MRIs and all medical history sent to him. My parents flew down last week to Houston for an appointment. The doctor took tests and examined my dad's files and suggested that my dad try copaxone. It is an injectable drug that has shown to slow down PPMS. It is quite expensive, $24 000 a year. The doctor gave my dad quite some hope. In Canada, the health system will only allow for copaxone's use for people with RRMS. The doctors refuse to give my dad copaxone. The MS clinic here does not return my dad's phone calls, appointments are made yearly because they don't have enough staff even though we are the highest per capita for MS patients in Canada. It is extremely frustrating because it seems like now there is no help. 

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Donna Jo, Community Member
8/10/09 10:26am

Wow... I feel your frustration.

I too live in Canada and know what you mean about the MS doctors. I have recently changed clinics and seem to be getting better results so far. I'm interested in copaxone. I'll have to read up about it and see what my Dr says about it.

 

I think we must stay determined, and keep searching, learning and trying new things.

I recently had botox injections in my leg but so far they don't seem to have helped (yet). Next I'm going to try acupuncture.

I'm really interested in researching about Vitamin D in large amounts. So thats on my list too.

I have found that getting a Vitamin B12 shot every 3 weeks has really helped my fatigue. It took me a couple of months to realize it but I'm sure its this shot that helps and the cost is so minimal too. I don't have nearly as many naps as I used to have.

 

I'd love to hear how the copaxone works out.

 

Best of luck

Donna 

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Gigi, Community Member
10/20/09 3:12am

Hello,  

 

I was wondering where abouts in Canada you live.  A family member of mine lives in Vancouver and am under the care of a doctor at the MS Clinic at UBC.  Her MS has gotten progressively worse since giving birth 3 months ago and she`s in a "vegtable like" state.  Prior to giving birth she was healthy and had not sustained an attack in 10 years.  She is has completed a round of chemo at present but it does not seem to be helping, nor are her doctors opptomistic that it will be a success ... i am trying to find the best neurologist with a speciality in MS to get a second option or to find out what options are available her at this stag ... any suggestions?

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Donna Jo, Community Member
10/20/09 12:28pm

I live in the Vancouver area also.

I too go to the UBC MS clinic. I switched over about a year ago as the other one didn't help at all.  I see  Dr Oger   ( pronounced O Jay) so far I am pretty happy as he seems to be doing things to help.

 

I know that UBC has a few Drs. in their clinic, I think you have to be so very persistent sometimes, almost like you are nagging! but the squeaky wheel gets the grease right.

 

All the best of luck--- I will be thinking of you and your family

Donna

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Gigi, Community Member
10/20/09 5:53pm

Thanks for the reply.  If you dont mind me asking - is your MS quit severe?  Have you ever looked into options other than those recommended by the doctors at UBC ... from what I've hear UBC is one of the best facilities but at this point in my aunt's illness there isnt much they can do (so they say) I have done extensive research and have found a few doctors that are doing some experimental treatments such as a doctor at the John Hopkins Institution ... have you ever looked into options across the border?  Do you know if there is a world re-known MS Specialist .. I am trying to find a doctor that is very well known for treating progressive MS.

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Lori, Community Member
12/24/09 1:39am

I too live in the lower mainland (Surrey) and have PPMS.  I used to go to the MS Clinid at UBC, where I also saw Dr. Oger on my very first visit.  My primary neuro there, was good and seemed to ask all the right questions. bottom line I wanted something closer to where I live as getting to UBC was physically taxing on me, so she suggested I see her at her private practice out my way.  This was all fine and well until she moved out of province and recommended another  Dr who was also a neuro.  As it turns out, being a neuro doesn't mean an MS doctor (who knew!), so I am now journeying back to UBC double quick.  I have been taking Lyrica for my PPMS as this is what  was prescribed, and is doing the job of  quelling my pain but nothing else.  I am glad to find this site, as I have been looking forever for a place to discuss these things.  Why is it so hard to find a good forum? Lori

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Stacie5118, Community Member
6/29/10 6:06pm

I was diagnosed in 2/2009, I am 43 now eventhough looking back at my life a few years ago I believe I already had the disease for several years thinking I had a knee injury (NOT) I feel the same way Lori, I feel very alone with this disease and I think it sucks that the research is focused on RRMS.  Only 10% of MS patients have PPMS, I tried Copaxon for 1 year, didn't have any new lesions but one of the lesions got bigger. I am now on Betaseron which I hate with all the side effects and I feel like a pin cushion trying all these therapies that don't seem to be working.  I have been apprehensive about responding but its nice to know that I am not alone with this lovely disease.  I look forward to a response from anybody, please I need someone who can relate.  Thank you, Stacie.     

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Lori, Community Member
12/24/09 1:40am

I too live in the lower mainland (Surrey) and have PPMS.  I used to go to the MS Clinid at UBC, where I also saw Dr. Oger on my very first visit.  My primary neuro there, was good and seemed to ask all the right questions. bottom line I wanted something closer to where I live as getting to UBC was physically taxing on me, so she suggested I see her at her private practice out my way.  This was all fine and well until she moved out of province and recommended another  Dr who was also a neuro.  As it turns out, being a neuro doesn't mean an MS doctor (who knew!), so I am now journeying back to UBC double quick.  I have been taking Lyrica for my PPMS as this is what  was prescribed, and is doing the job of  quelling my pain but nothing else.  I am glad to find this site, as I have been looking forever for a place to discuss these things.  Why is it so hard to find a good forum? Lori

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Gigi, Community Member
10/20/09 5:58pm

Hello,  

 

I was wondering where abouts in Canada you live.  A family member of mine lives in Vancouver and am under the care of a doctor at the MS Clinic at UBC.  Her MS has gotten progressively worse since giving birth 3 months ago and she`s in a "vegtable like" state.  Prior to giving birth she was healthy and had not sustained an attack in 10 years.  She is has completed a round of chemo at present but it does not seem to be helping, nor are her doctors opptomistic that it will be a success ... i am trying to find the best neurologist with a speciality in MS to get a second option or to find out what options are available her at this stag ... any suggestions?

Reply

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linda, Community Member
1/29/10 9:33am

Your post is very timely and interesting. I had asked my neurologist about Copaxone and was told the same thing. So, from Canada I might surmise that Health Care is not so great that you had to come here to Houston?? As someone with a chronic disease, I worry about us following that path.

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kerry, Community Member
8/14/09 3:24am

Hi,

I was diagnosed with primary progressive christmas eve of 2007 at 12:30 lunchtime and then my husband and I were wished a happy christmas, the appointment lasted for 15 minutes. Since then I feel that Doctors dont listen all they seem to do is say theres nothing out there for ppms. I become very low in mood and frustrated as there was no support offered to my husband either. I have gone from being very active to always feeling drained, using 2 sticks if not the chair and I have only ever had 3 appoints in that time with the neurologist. Im not prepared to just sit back I dont want to learn to live with ms, it has to learn to live with me. But I am running out of ideas, I have asked for physio but have been told im to far gone. My husband and I went to so called support group, never again, it was more like a waiting room for god. I am only 34. If you find something useful, please share.

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Charlene Boone, Community Member
8/19/09 11:50am

Kerry,

I am Charlene and my husband Mike 46 was diagnoised Dec. 2008....he was in and out of the hospital for different viruses..etc for 4 years...his MRI shows he has about 10-15 leisons in the brain and a T2 in the corbus collesum....his spinal taps (3) comes back negative...which with PPMS they do...

I'm right their with you girl....our husbands are very tired at the end of the day...BUT encourage your husband to stay active...Mike works in the yard...walks the dog...and believe it or not he plays tennis...now he may not play like he used to but he's playing.... read about his diet also...use the fish oil...a good multivamin...Mike doesn't take any mediciations...be aware that if he says he doesn't feel like doing something just say "thats fine we will do it another time"...also depression is a factor with PPMS...our neighbor works for the best neurologist in our area and she was able to get my husband in last year and he diagnoised him.....the doctor told my husband it takes about 1 year to see how the progression develops to honestly say that he has PPMS...but they are happening....I just pray for him everyday...just know that for men it is really hard for them to be sick...yes different than us women....your life will change...emotionally, sexually....just know that this can progress differently for each patient....I will be glad to talk to you anytime...just feel free to contact me...my home email is boonefam@charter.net.

God Bless You,

Charlene

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Tracie, Community Member
1/21/11 7:07am

Hi 

My husband was diagnosed 6 years ago with primary progressive he was a very healthy active person who enjoyed tennis and partying after 6 years he is now blind, cannot walk and generally sits in his wheelchair all day he is 45 years old and it just breaks my heart, he doesn’t have depression but he gets extremely frustrated with his situation. He is told constantly by his doctors there is nothing  they can do for me. I feel so sorry for people with this affliction, its hard work for me looking after him, Im a fulltime carer now having to give up my job.

All the best to all the people with this disease.

Tracie

 

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Charlene Boone, Community Member
8/19/09 3:27pm

Duh....let your husband read this...thought he was the one with PPMS....I reread by response and realized it was you.....LOL...not funny...but that's me I'm tired and read too quicky...

 

Take care,

Charlene

 

We are raising our 3 granddaughters 14, 10 & 7...(that's my excuse and I'm sticking to it !! haha)..

 

Good Evening

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Charlene Boone, Community Member
8/19/09 11:18am

Donna,

This is Charlene Boone....how are you doing?...my husband Mike Boone as I previously emailed you was diagnoised with PPMS in December 08....he is having worse symptons...I would like to have Steve's email address if possible...he and Mike sound like they have the same symptons...also wondering how he is doing....

 

Take care

Charlene

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Jerry, Community Member
8/28/09 7:37pm

Hi,
my name is Jerry. I was diagnosed with ppms for the third time August 3, 2009 by a University of Pennsylvania Hospital 'big shot' MD, Neurologist.  His diagnosis was a confirmation of 2 previous findings if 2 different local neurologists.  I have been given the same stories as all of the others on this site and I am going out on my own.  I was told that Copaxone may do something, then again, maybe its just going to make me fell better that I am trying something, Pharmaceutical.  I am not taking anything that has not been proven to releive my symptoms, period.  I have been following some natural guidelines that I found in Dr. Andrew Weil's book, pontaneous Healing.  If you don't know Dr. Weil or believe in his stuff, I feel sorry for you. 
I started on a regimen of many different vitamins, which I found in his book, as soon as I came home from one of my many neirologist visits,  You know, the type of visit where the credentialed guy in the white coat tells you that there isn't anything for you.   Bull !! there is something but these guys are not going to tell you anything that isn't pumped out of a pharmaceutical machine. 
| did not know about the doses of B-12 and the vitamin D.  Thank you all for your info. I
I hope you all can stand and fight this, I will.  
Best of Luck to All,  there will be a cure , or we will find one for ourselves.
Jerry 
  

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thoughtaboutit, Community Member
10/10/09 10:51am

Jerry,Hi my husband has ppms and it started in 2000 when a tractor rolled over on him while bailing hay,he was life flighted and in a coma with swelling of the brain, He woke up after 3 days and threw a fit and wanted to come home, he still had a fever of 103 degrees, David (my husband) is 6ft.4 and was strong always farming and hunting, I've never met a stronger man. After several months he started complaining of double vision,took him to more doctors and they said he needed a sinus cavity operation, so he did it and it did help his vision, then when he was out of state he had his first relapse and couldn't walk and ran a bunch of tests and said he might have ms when I got him home I nursed him back to health only for more relapses, while on steroids I became pregnet with our son at 40  years old. David was having more lesions on the brain and was put on Rebif, he took it for a while then stopped without my knowing, David is in a nursing home now and has been there for over 3yrs. he had ended up in the hospital again while out of town in2005 and had anmonia and almost died, was on life support for 8days, its been a long road just to get him where he is now.David was on a tube feeding for a year and now eating on his own, but he has atrophy in his hands and feet and has to have someone feed him.I believe his ms made him asperate and that is how he got anmonia. His doctor says there is nothing for ppms but I won't give up hope.David is not competent and thinks he walks, not sure if it is due to lack of oxygen from anmonia.So anyone who has this diseise, please pay attention to your symptoms and be careful about swallowing. David's doctor has him on Rebif again to keep it from progressing but I've read thatRebif is used for secondary and not primary. Keep up on all the new info and keep moving and stay stress free, that is what will set it off. Thanks for the ear, Thouhtaboutit!

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Danyeil, Community Member
9/10/09 7:55pm

Hello all.  My 38 year old brother in law was diagnosed with Primary Progressive 6 years ago.  It has been very hard to watch a very active man go downhill so rapidly. He was diagnosed with it when he was 32 by a spinal tap.  He has tried many different

new experimental drugs but they don't help.  No-one in his family has ever had MS, so it is just amazing how it just hits a person and takes over.  My sister tells me that he gets upset and wants to give up already.  I can't even begin to imagine what it is like for him.  I know what he goes through everyday and the littlest things are so difficult to do, such as making a sandwich.  I try to keep him positive!  I just hope that someday soon, that they will find a cure for his terrible disease.  I wish nothing but the best for all of you and keep optimistic and positive no matter what!  Don't let this disease keep you from doing the things that you love to do.   

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Dani-Rae, Community Member
12/27/10 12:06am

Danyeil,

Just wanted to mention that it's nice to hear of someone's family really trying to understand what the person with PPMS in their family is going through! My fiance has no idea! He gripes because I sleep so much & I move so slowly! He told me that my back might not hurt so much if I would stand & walk upright! I AGREE! The problem is, I'm not hunched over because of the pain! It's because of the muscle spasms! Sometimes my lower back & hamstrings lock up as tight as they can & NOTHING will make them loosen up. I LITERALLY CAN NOT stand up straight! He has type 1 diabetes, so he's not as sympathetic as a healthy person would be, I guess!

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Dani-Rae, Community Member
12/27/10 12:06am

Danyeil,

Just wanted to mention that it's nice to hear of someone's family really trying to understand what the person with PPMS in their family is going through! My fiance has no idea! He gripes because I sleep so much & I move so slowly! He told me that my back might not hurt so much if I would stand & walk upright! I AGREE! The problem is, I'm not hunched over because of the pain! It's because of the muscle spasms! Sometimes my lower back & hamstrings lock up as tight as they can & NOTHING will make them loosen up. I LITERALLY CAN NOT stand up straight! He has type 1 diabetes, so he's not as sympathetic as a healthy person would be, I guess!

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Dani-Rae, Community Member
12/27/10 12:06am

Danyeil,

Just wanted to mention that it's nice to hear of someone's family really trying to understand what the person with PPMS in their family is going through! My fiance has no idea! He gripes because I sleep so much & I move so slowly! He told me that my back might not hurt so much if I would stand & walk upright! I AGREE! The problem is, I'm not hunched over because of the pain! It's because of the muscle spasms! Sometimes my lower back & hamstrings lock up as tight as they can & NOTHING will make them loosen up. I LITERALLY CAN NOT stand up straight! He has type 1 diabetes, so he's not as sympathetic as a healthy person would be, I guess!

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ken, Community Member
9/28/09 8:00pm

hi donna jo , i was diagnosed in 2005 with ppms , i to wallowed in self pity for the 32 years then i read a book called the ms recovery diet , it hashanged the course of the disease ,the drs want nothing to do with it but i suggest you get a copy and folllow it closely also they have abn excellent website and the authors are very helpfull.

good luck

ken   

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Donna Jo, Community Member
9/29/09 10:31am

Thanks Ken

 

I have that book now too.. I also just purchased the : Anti inflammatory diet and recipe book.

 

I'm slowwwwlllyyy making the change, just not 100% ready to give up some things yet

but hey, we're only human right!

 

I myself am finding that it is so important to keep moving/exercising. I let things slip abit with this summer (using the same old excuses: heat, busy, etc) but now I realize that I just can't ever do that again. We have to keep our cardio strong and our muscles working the best we can. After only 1 week of getting back into my regular program I feel so much better.

 

Good luck everyone and lets stay positive and as healthy as we can.

 

Donna

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Dennis Green, Community Member
10/17/09 9:27am

hi donna,

my name is Dennis and ive had ms for ten yrs.there is a wide range of possible outcomes.it takes a long list of monitoring things like bloodwork to determin what works to keep the disease managable.you half to know your limits by doing bloodwork and using todays medicine your life will be filled with confidence.i hope i helped GOOD LUCK!!!!!!

 

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Father and Daughter, Community Member
11/30/09 8:40am

Hi Donna

I am the Father of a Daughter that was diagnosed with MS primary progessive around 2004 and  I also feel there is not much being done to help the MS Patients unless you have money and lots of it. Example when my daughter was first diagnosed in the poor peoples hospital clinic at the hospital they offered all kinds of treatments and she should stay in the hospital for a months for more treatments but when asked what insurance she was out of the hospital in 5 minutes. I have browsed the internet always looking for more news and srtill haven, found any thing good luck to all of you.

                                                                      Father and Daughter   

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Donna Jo, Community Member
11/30/09 11:10am

I am constantly researching on the internet for help as well. I have found that for myself it is really important to keep active; I go to yoga 2x a week, physio and massage and and adaptive swim class. Once you stop moving, you sieze up! I also take supplements: COQ10, Multi vitamin, Omega 3, Tumeric, B Complex, and 2000 iu of D. Im now looking into "lymphatic draining massage" as well as Hyperbaric Chambers as these may both help with cellular damage. I watched a show on W5 last week about Dr Zamboni in Italy who thinks he may have found a link to MS with narrow veins -- (google his name) The MS Societys are finally coming on board and looking into his discoveries.

Lets keep our fingers crossed that help is on the way~ 

I find that weather really effects me.. I'm curious if this is for others too.

I live in Canada and its cold and wet right now! I feel so much better when its warmer

outside-- I don't necesarrily walk better but I def feel better --

How about everyone else?

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linda, Community Member
1/20/10 12:13pm

I am also always searching the internet for research and info. I was diagnosed with "probable MS" 20 years ago when I collapsed when I got out of bed. 30 minutes later I could stand. I immediately was referred to UT clinic in Houston where I was assigned to a doctor just starting out. Her name is Michelene McCarthy. She told me that I had two choices: either sit and wait for the wheelchair or get out there and do everything that I wanted and live to the fullest. I chose the latter. I got my Masters, was quickly hired by a college and within 3 years was dept. chair. I learned three languages, traveled far and wide and also teach. Now, this was done with a lot of sleep, a lot of rest and an OK for what I could do. I take Lyrica for muscle pain, Elavil and Tramadol for pain as needed. The Elavil seems to stop the tingling and puts me to sleep. I have taken 10 mg for years.

Last meeting with my neuro, I explained that I have had this bout of spasms, pain etc for 10 monthes. Did he think I needed to go the Beta Seron route? Well, he told me that this is for Relapsing Remitting and I am not. And from that I concluded...This last and worst of all bout happened after I had my very first HERPES attack and it was in the cornea of my eye. It had no residual effects but maybe my taking Valtrex at times helps out? I do not know...any ideas out there?

Some treatments listed in this group DO work because I found them trial and error. For example, Vitamin D. I see a difference with 3000 mg per day. It is the new standard dosage. Also vitamin B12. I eat only unprocessed food whenever possible and when I stopped drinking diet Coke...well, 24 hours later there was a change. I'll never drink or use aspartamine again. Read on the net about that and MS. Again, I found this out by trial and error. I do mild exercise like Yoga, Balance Ball and swimming.

I try to take every day as it comes. If I could ever find Dr. McCarthy [I think she is in Florida] I would thank her for pushing me to a better life than I thought that I could ever have with this crappy disease. I'll keep reading these posts. They are very very helpful. Linda

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Donna Jo, Community Member
1/20/10 12:31pm

HI Linda

 

Good for you. I get so frustrated when I see people give up just because the Doctors don't encourage them to keep moving. I remember telling my neuro that I use an Eliptical Trainer and his eyes almost popped out of his head!! I'm fine on the machine, I just have to be very careful when Im done and sit down for abit to let my legs recover.

 

Interesting about the vitamin D ... and very interesting about the diet coke. Wow.

 

Ok, I'm off to my yoga class now!

Bye for now

Donna

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david, Community Member
12/15/09 8:15pm

Check Out the Liberation Treatment and spread the word!!

Its not well known in the US but the doctor is from Italy and the results are awe-inspiring. It was on the news in Canada, I'm not sure why the news hasn't traveled everywhere else as quickly but everyone should look into it and talk with there doctors about it.

My mom was diagnosed 8 years ago and she just spoke with her doctor about it, they are looking into doing the scans and possible treatment.

 

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Lori, Community Member
12/24/09 1:43am

Where in Canada do you live.  I also got super excited about this when I heard of it. Co-workers were tracking me down to give me this wonderful "news".  I have an appointment to see my neuro - anything to help!

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Jason, Community Member
12/27/09 1:26am

http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20091120/W5_liberation_091121/20091121?s_name=W5

 

This is the link to the W5 special on the Liberation treatment.  It is great to watch and to give some hope. I was diagnosed when I was 32 in 2006 with PPMS after strugguling with different diagnosis' since 1990.

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linda, Community Member
1/22/10 9:46am

I did research on Google this physician and the treatment. It does seem plausible. For the MS society to get involved is certainly encouraging. This group can't get any more cautious and conservative. I'll be going to my neuro this next month and I'm going to ask his opinion. I'd be willing to pay to see if I have it. When I get a massage, I seem to do better, so I get one every week .My massage therapist works heavily in the neck and head area which just might stimulate blood flow. I cannot say enough for one to cease aspartamine consumption. It really impacted my symptoms. Now, a neurologist will nearly always say 'coincidental' and I'm not going back on it to see.

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griffin63, Community Member
12/16/09 5:35pm

Hi,

I was diagnosed with PPMS about 4 years ago.I feel much the same frustration as you.My neurologists,of which I have 3,keep telling me to live in hope.Other than that I am also searching the net for possible cures or medication.I am afraid to say there is little out there.The good news is President O´`Bama lifted the ban on feotel stem cell research in the States.Good ridence to Bush.

You will find many sites claiming to have miraculous cures for PPMAS.This is a lot of nonsense.They atre golod diggers attenpting to get your hard earned money,Kings Colledge in London are at present the most advbanced in this field,and they will tell you,they are far from any sort of cure.

 

I have now lost my sight and am forced to carry a white cane,I dont like it one bit.However it makes my daily lifem a little more bearable.

Keep your chin up and keep your hopes alive!Smile

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mevina, Community Member
1/15/10 12:52am

please google ppms ldn.

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Paula Longley, Community Member
3/31/11 5:03pm

Try Low dose naltrexone. You won't sleep, and no narcotics, but it has shown to have the potential to reverse or halt the disease. It's inexpensive, but must be compounded.

 

I believe the reason the neurologists can't address ppms is because there are no answers.

 

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it's just me, Community Member
2/ 2/10 6:31pm

Hi Donna,

I just feel like talking.I was diagnosed in the early 90s with PPMS.it has been a long hard road. I was in my early 30s with a tingling in my knee that use to drive me insane. I was very active, the outdoors type of a guy. After a zillion test I was finally diagnosed. I didn't even know what multiples sclerosis was. Boy, did I learn fast. no matter how hard I tried to stay active, it just didn't happen. Now I sit in an electric wheelchair, my legs are bent and won't straighten out, my hands are curled up into a fist, I cannot turn myself in bed at night and my problems go on and on. These problems I learned to deal with, but the problems I'm having a hard time with are the emotional problems. I have four boys. I had always dreamed about going to the park with them and playing ball, riding bikes, building snow forts and snowmen, roughhousing etc. etc. etc. instead, I had to sit here and watch them grow up without doing what I dreamed of. I couldn't even teach them how to ride a bike. not only did I miss out on them, but they also missed out on me. Now I have a grandson, he is so cute, he will light up the darkest room. I want to pick him up and nuzzle him so bad. I see other family members do it, and I see the way he laughs and giggles, and I get so mad, not at them, but at the fact that I cannot do that. it has been a long hard road. The physical part is terrible but something I learned to deal with. The emotional part is something I am having a hard time with. All the things in life that I've missed out on. I can't even roll over in bed and snuggle with my wife on a chilly night. I need help with everything I do. I would like to talk more, but it is dinner time and time for me to be fed. Like I said in the beginning I just wanted to talk.

Thanks for listening

Reply
JAson, Community Member
2/ 8/10 12:26am

I, not events, have the power to make me happy or unhappy today. I can choose which it shall be. Yesterday is dead, tomorrow hasn't arrived yet. I have just one day, today, and I'm going to be happy in it.
Groucho Marx

 

I was given this quote in the mail by my local MS society. I have it taped to my fridge to remind me every day.

Reply
it's just me, Community Member
2/ 8/10 11:55am

I thank God every day for the blessings in my life. I need no reminders to be happy. All I have to do is look around me and see my beautiful family. It's just that once in a while I get overwhelmed with thoughts and need to vent them. Once in a great while I think about what I could've done, or what I could be doing. I call these my "down days". Which are far and few between. I remind myself that there will always be somebody worse off than me. It would be nice just to get a break from this disease. I would settle for one minute. Because, as I'm sure you know, it's there when you wake up and it's there when you go to sleep, it's always there. People see it, but they don't feel it.

 

PS. Donna, thank you for your e-mail. I tried to e-mail you back, but somehow I kept screwing it up.

Reply
Orchid 5, Community Member
2/ 6/11 10:51am

Hello everyone!

I am PPMS and fairly understand the way you can feel.

I learned to appreciate what I still can do and stop comparing what I used to do easily to what I actually can, now.

Life is easier to be actually lived this way.

You have kids, a wonder I shall probably never come to discover. What about appreciating every moment YOU can share with them? Your loving capacity and communicating ability (by the way, do you know 'speech therapy'?) are what should make you someone special to them. I guess comparing ordinary people to PPMS experiencing people is no good for anybody. There are your good days, when you can actually do things, experience very nice feelings, and that's what you need to feel alive and happy.

Please bear in mind that the more exercising you practise, the healthier and happy your body. And that's a tangible reward! What is difficult and unfeasable at first becomes easier, more relevant/apposite.

I wish you all the best,

Orchid 5

Reply
it's just me, Community Member
2/12/11 12:11pm

Hi,

there is not too many things I can do these days by myself. About the only thing I can do by myself is talk. me and my kids get a long great, we joke and laugh, but they are grown now and have left the family nest except for my youngest who is at the age where he knows everything and cannot wait to get a place of his own. I do cherish everything I have in my life, it's just that once in a great while I have a little "pity party" for myself. I do not reflect that on to my family because I do not want them feeling down just because I am. I cannot help thinking about the way life would be if I did not have this terrible disease. I am thankful for what I have and the people that I am surrounded by. Once in a while, which is not very frequent, I just have "down days". MS, I think, is not something you just come to accept, I think it is something that you have to adapt to, because I do not accept it, but I have learned to adapt to it. you asked about speech therapy. I do not know speech therapy. why would you ask? take care of yourself and I wish you much luck on your journey through life.

It's just me.

Reply
Orchid 5, Community Member
2/15/11 2:14pm

Hello , It's just me!

Thanks for letting me know some of your fresh newsLaughing.

Speech therapy might be useful if your verbalization speed has changed and/or if you experience some attention misses for instance. The difference(s) observed may be temporary or permanent.

Maybe my English is not specific enough to refer to such specialized matters, please forgive me for the inaccurate wordings.

Let's say that in France, orthophonistes [speech therapists] are paramedical professionals that doctors may address MS/Alzeimer etc. patients to in order to correct such cognitive and/or speech oddness. It can help (in my case, to focus my attention to do sth or form a reasoning about things I'm not interested in

Now, I'm not sure if this matter might be of some use to you. It's just an idea...

 

Anyway, please feel free to keep in touch. I'll be happy if I can help.

Yours truly,

Orchid 5

Reply
Erling Smith, Community Member
2/ 3/10 6:36pm

Hi miss

I am 45 year old, 1964 model, engineer with ppms and now paralyzed in bed. Like you I search the internet for cure. Check Google.com for "Liberation Treatment" and let the advertisement run trough.

Best regards Erling Smith Iceland. e.smith@simnet.is

Reply
Jim Dyer, Community Member
2/ 8/10 6:55pm

VITAMIN D CAN INHIBIT AND PREVENT MULTIPLE SCLEROSIS

Research strongly suggests that high dose vitamin D3 therapy can significantly inhibit the progression of multiple sclerosis, with no adverse side effects. Other research also strongly suggests that if children maintain an adequate 25(OH)D level through puberty, they will not develop MS.

Clinicians treating patients with MS should be recommending high dose vitamin D therapy for those patients. Significant clinical benefits have been demonstrated, with no reported adverse side effects. 25(OH)D levels between 100-150 nmol/L are safe and effective, and even occur naturally in many individuals.

Health care practitioners treating children should recommend that their young patients maintain a 25(OH)D level between 80-100 nmol/L through puberty to prevent MS from developing.

I am neither a Physician nor a microbiologist. However, I suffer from Primary Progressive Multiple Sclerosis. I was able to stop the radiographic progression of my MS (for the past 3 years) through high dose vitamin D therapy.

 

The Research

Mouse studies conducted over 10 years ago by Colleen Hayes, PhD at the University of Wisconsin-Madison revealed that vitamin D can stop immunodemyelinating disease. Since that time, multiple meta-analyses and clinical studies have shown that vitamin D decreases the incidence, and inhibits the progression, of Multiple Sclerosis. Let's discuss the existing research, and how it fits together, starting with the mouse studies.

Dr. Hayes was inducing EAE (experimental autoimmune encephalomyelitis- the mouse model of MS) and discovered that pretreatment with calcitriol (the hormonal form of vitamin D) had astounding effects. Dr. Hayes reported that: "Moreover, 1a,25-(OH)2D3 pretreatment completely blocked EAE induction in MBP primed B10.PL mice (39). Further,1a25-(OH)2D3 treatment rapidly reversed the paralytic symptoms of mice with severe acute EAE (178)." (footnote 1)

Vitamin D has an obvious immunomodulating effect that stops white blood cells from attacking native tissue. Vitamin D not only completely stopped EAE (mouse MS) from developing, but vitamin D also reversed the effects of EAE when utilized during the acute phase of the disease (i.e. early). Dr. Hayes explained, "Our laboratory has also studied the process by which 1a,25-(OH)2D3 reversed EAE(178). Mice with severe acute EAE (complete hind limb paralysis) were randomized to receive 1a,25-(OH)2D3 or placebo treatment. The hormone-treated animals began walking with a wobbly gate[sic] at 3 days post treatment, whereas placebo treated mice remained paralyzed. A histolopathological examination at 3 days post treatment showed the hormone-treated mice had a 50% decrease in white matter and meningeal inflammation" (footnote 2)


The immunomodulating activity of vitamin D demonstrated in the mouse studies is also demonstrated in studies analyzing human populations. Two studies from the Harvard School of Public Health show that higher vitamin D levels decrease the incidence of MS in humans.

The first study involved analysis of data gathered between 1980 and 1999 from dietary assessments of 238,000 nurses involved in the Nurses Health Study and Nurses Health Study II. The results were stunning:
"We found a 40% reduction in risk of MS among women who use supplemental vitamin D, primarily in the form of multivitamins, compared with women who do not use supplements" (Footnote 3.)

The second study by the Harvard School of Public Health involved analysis of blood samples obtained from the Department of Defense. More than seven million blood samples were available, and from those samples and other records 257 cases of MS were identified. Those cases were then matched to 2 controls by age, sex, race/ethnicity, and dates of blood collection. The 25(OH)D blood levels were analyzed, and (Footnote 4)

In addition to the Harvard studies, other research has revealed a direct link between vitamin D and a gene suspected of causing MS, and Clinical trials have demonstrated that high dose vitamin D can reduce the frequency of MS attacks, and the number of active MS lesions, by 50% or more.

In a study funded by the MS Society of Canada, the UK MS Society, the Wellcome Trust and the Medical Research Council, Dr. Julian C. Knight (University of Oxford, UK) and collaborators at Oxford and the University of British Columbia have established a direct relationship between a gene believed to play a role in MS and vitamin D. (footnote 5)
According to a February 6, 2008 article entitled "Study Shows link Between vitamin D and an MS Gene", appearing on the National Multiple Sclerosis Society website:"The researchers found that proteins activated by vitamin D in the body bind to a particular DNA sequence lying next to the DRB1*1501 variant, in effect switching the gene on. The authors believe that vitamin D deficiency may lead to lowered expression of this gene, in turn altering immune processes that ultimately trigger the immune attack on brain and spinal cord tissues in MS."
The gene study again demonstrates the link between adequate levels of vitamin D and preventing MS."Our study implies that taking vitamin D supplements
during pregnancy and the early years may reduce the risk of child developing MS in later life," lead author Dr. Sreeram Ramagopalan said in the news release. "Vitamin D is a safe and relatively cheap supplement with substantial potential health benefits. There is accumulating evidence that it can reduce the risk of developing cancer and offer protection from other autoimmune diseases." ("Vitamin D Deficit May Trigger MS Risk Gene", U.S. News and World Report (Health), February 5, 2009.)

In a presentation at the 2008 annual meeting of the American Academy of Neurology on April 28, 2008, a group of Canadian researchers presented the results of a study sponsored by the Canadian MS Society. The study involved a group of 25 MS patients who took an average of 14,000 IU of vitamin D3/day for 1 year (high dose group), and a group of 24 MS patients who took an average of 1000 IU/day for 1 year. The contrasting results were astounding. The group taking 14,000 IU/day suffered 41% fewer relapses that they did in the year before the study began, and only 16% suffered any relapses in the year of the study. By contrast, in the group taking 1000 IU/day, there were only 17% fewer relapses, and 40% suffered relapses during the year of the study. The high dose D3 group was also given 1200 mg/day of calcium. Even though the high dose group reached a maximum mean 25(OH)D level of 413 nmol/L, there were no adverse side effects reported, including calcium abnormalities. High dose vitamin D therapy cut the relapse rate by over 50% (Footnote 6)

 


Dosage/Side Effects

A 2007 study from the University of Wisconsin -Madison revealed that MS patients could take fairly large amounts of vitamin D3, with no side effects. The 28 week study involved only 12 patients with RRMS that were given increasing doses of vitamin D3, escalating from 28,000 t0 280,000 IU/week. The searchers found that "Patients' serum 25(OH)D concentrations reached twice the top of the physiologic range without eliciting hypercalcemia or hypercalciuria. Thedata support the feasibility of pharmacologic doses of vitamin D3 for clinical research, and they provide objective evidence that vitamin D intake beyond the current upper limit is safe by a large margin." Kimball, Ursell, O'Connor and Vieth; "Safety of Vitamin D3 In Adults With Multiple Sclerosis"; The AmericanJournal of Clinical Nutrition; Vol. 86, pp.645-651, at 645 (2007) An ancillary finding was that over the short course of the study, the number of gadolinium enhancing lesions(by MRI) among the study participants decreased by 50%. (Footnote 7)

The Wisconsin Study and the Canadian Study (discussed above) both provide good evidence that high dose vitamin D therapy is safe. Since it has been reported that 14,000 IU/day is safe, and given the results of the Canadian Study, 14,000 IU/day of vitamin D3 appears to be a therapeutic dose. Dr. Hayes stresses the importance of 25(OH)D level over any oral dosage of vitamin D. Dr. Hayes noted; "Adults living or working in sunny environments easily generate >10,000 IU/day of vitamin D through sun exposure without adverse effects., so the safe upper limit for total vitamin D nutrition is at least 10,000 IU/day (Vieth 1999)"(footnote 7)., and that "Adults living or working in sunny environments, where MS prevalence is lowest, have circulating 25-hydroxyvitamin D3 levels between 105 and 163 nmol/L (Vieth 1999). Thus a serum 25-hydroxyvitamin D > 100 nmol/L may be optimal to prevent MS." (Footnote 8).


Personal Anecdotal Experience

I was diagnosed with PPMS in February, 2004, and was advised that there was nothing available that could stop the progression of the disease. I had active MS lesions by gadolinium MRI at the time of my diagnosis. My research revealed the mouse studies by Dr. Hayes and the Harvard School of Public Health analysis of the Nurses Health Studies. I raised my 25(OH)D level to 100nmol/L, and have maintained that level for the past 3 years. I have obtained serial 25(OH)D and blood calcium levels and, although my 25(OH)D level has been as high as 234 nmol/L, I have never experienced an elevated blood calcium level.

Ten months after my diagnosis I had a second gadolinium enhanced MRI, and displayed no active MS lesions. I have undergone annual gadolinium enhanced MRIs, and have had no active MS lesions for 3 years (3 consecutive MRIs). High dose vitamin D3 therapy has stopped the radiographic progression of my MS, and reversed significant bowel symptoms I experienced prior to institution of the therapy (although it has not reversed motor symptoms in arms, trunk and legs).


Prevention of Multiple Sclerosis

Both the Harvard School of Public Health, and Dr. Hayes, discuss the important findings of immigration studies that strongly suggest that if children maintain an adequate level of vitamin D through puberty, they do not develop MS (footnote 1, at p , and footnote 4, at. p. ). The Harvard School of Public Health suggests that: "according to a recent review, the best serum 25-hydroxy vitamin D concentrations are between 80-100 nmol/L (42)" (Footnote 5, citing ). The recent gene research suggests that pregnant women and young children should take supplemental vitamin d to prevent Ms, and suggests 200 IU/day.

Conclusions

Studies to date have found that high dose vitamin D therapy will significantly reduce the frequency of MS attacks in individuals with RRMS. After extensive research, no contrary studies were located. Neurologists (or others) who treat patients with Multiple Sclerosis should be recommending to those patients that they increase their 25(OH)D blood levels to 100-150 nmol/L. Patients can safely take an average of 14,000 IU/day with no adverse side effects.No author has suggested any adverse side effects at this level, and the collateral benefits are significant.

All physicians should be recommending that children maintain a 25(OH)D level of 80-100 nml/L through puberty to prevent MS. Again, there are no known adverse side effects, and there are significant collateral benefits.


Epilogue: Guillian-Barre Syndrome

It appears that the induction of EAE in mice mimics the onset of Guillian-Barre syndrome. Perhaps high dose vitamin D3 should be administered, in addition to undertaking appropriate diagnostic procedures, at the first sign of unexplained neurologic symptoms. There are no reported side effects of high dose vitamin D therapy, and all of the studies, particularly the mouse studies, indicate that high dose vitamin D therapy is likely to stop the demyelinating process and rapidly reverse the symptoms, if instituted early in the diagnostic process.


Footnotes:
1." Hayes, et.al., "The Immunological Functions of the Vitamin D Endocrine System", Cellular and Molecular Biology, (at page 11) 49(2), 03-34 Mar, 2003, ISSN 0145-5680/03, citing
2. Id, at p. 12)
3. Munger, et.al., "Vitamin D intake and the incidence of multiple sclerosis", NEUROLOGY, pp.60-65, at 64,January (1 of 2) 2004.
4.

Serum 25-Hydroxyvitamin D Levels and Risk of Multiple Sclerosis
Kassandra L. Munger, Lynn I. Levin, Bruce W. Hollis, Noel S. Howard, and Alberto Ascherio; JAMA. Vol.296, No.23, pp.2832-2838 (Deccember., 2006)

5. Expression of the Multiple Sclerosis associated MHC class II allele HLA-DRB1*1501 is Regulated by Vitamin D is published in PLoS Genetics.
6." Immunological Analysis of a Phase I/II Dose-Escalation Trial of Oral Vitamin D3 with Calcium Supplementation in Patients with Multiple Sclerosis' presented April 28, 2009 at the annual meeting of the American Academy of Neurology.

7. Hayes,"Vitamin D: a Natural Inhibitor of Multiple Sclerosis", Proceedings of the Nutrition Society, 2000, v.59, p531-535, at p.533.
8. Ibid.

 

Reply
linda, Community Member
2/25/10 10:15am

This post really helped me. I was taking Vitamin D but only in my multi vitamin and this is not enough. My G.P told me that nearly everyone she tested was deficient. She doesn't test anymore unless the patient insists.

 I now take D and in the liquid form. Last week, I asked my neurologist and he told me that it is very important. My question is why didn't he tell me this 10 years ago or during any of the subsequent office visits? He is aware of the significance of vitamins and a healthy diet. So, thank you for this post and especially for the footnotes. Please continue to help us. When it comes to MS, I feel that I am a detective with ever changing clues and also my own advocate in the medical arena. This discussion board is very helpful.

Reply
Danielle Logan, Community Member
3/21/10 3:18am

Hi Donna. Its Danielle and im 35 and diagnosed primary progressive April 09. Im a bit the same theres not much out here for us, Im doing Chi-Gong Chinese Therapy and thats great and same diet, vitamins etc. Ask yr doc about the trail for Fingdimod drug coming out couple weeks Keep well Danni

Reply
drmarc, Community Member
7/16/10 9:43pm

I don't know of any treatment.  But, I can share that my partner who has had RR MS for over 25 years is now experiencing SPMS.  Although he struggles to walk 20 feet, and refuses to use a scooter or wheelchair, we are still able to go around town together, cruise to the beach, and go out to events.  The miracle for us is the Segway.  We go for "strolls" every day and night.  And because I can also use a Segway, my partner is not identified as disabled which is important for him at this stage of the disease.  Everyone handles the psychological aspect of this disease differently.  But the Segway literally changed our lives.  After two years of sitting in the house everyday, now we cruise to the beach, the store, through parks, and to community events.  I have uploaded a video on Vimeo.  Send me an email if interested in watching the video or finding out more about the Segway.  drmarcromano at aol <dot> com

Reply
judy, Community Member
7/17/10 1:16pm

Have you ever tried electrom,agnetic therapy with an ondamed machine?  it helps to balance the electromagnetic field and helps the body heal itself somewhat like acupuncture only less invasive.  It might be worth locating someone who is experienced in treating with the ondamed machine or other such electromagnetic machines.

 

Judy

Reply
james Phipps, Community Member
8/ 2/10 9:30pm

donna

 

this was an old posting so please excuse my late comments. my name is jim and i'm 60 with pp diagnosed in about 2000. i'm happy to report i'm still ticking so i guess that's a positive milepost i've passed for a kid like you. i still work,drive and manage to get around. it's a struggle for sure though and you must be prepared to battle. for me the problem has been primarily the right leg which just doesn't like to come along with the rest of me. as you've probably learned from your own experience pp is a tough one with no drugs yet found to stop the progression. there are lots of drugs to help cope with symptoms that your dr. can help with such as baclofen for spasticity and lyrica for pain. i'm going to suggest you exercise and stretch as these two are key to maintaining strength and movement. shoot me an email any time. i hope you keep fighting on.

 

jim phipps 

Reply
Donna Jo, Community Member
8/ 2/10 10:01pm

Hi Jim

 

We sound very simular! 

I too am very positive and keep busy with exercise, physio, yoga, massage,

etc..  My right side is my problem side. My right leg doesn't cooperate either.

Gonna go for ccsvi-- heard so much good results.

 

Thanks for your post.

 

Donna

Reply
james Phipps, Community Member
8/ 3/10 5:19pm

donna

 

glad to hear you're staying active. we need to keep the good parts working hard to compensate for the non cooperative parts. what is ccsvi? 

 

jim

Reply
Donna Jo, Community Member
8/ 3/10 6:09pm

drop me an email:

 

(email removed)

 

and start searching :  CCSVI  Dr. Zamboni

 

there will be tons of information for you to read! 

Reply
Carlie Kavanagh, Community Member
9/12/10 7:58pm

HI, Can anyone out there tell me if anyone they know that has Primary Progressive M.S. Has had the new procedure{I'm sorry ,I cannot recall the proper name }THe stint insertion in the neck veins? My husband is recently diagnosed with M.S. {49} & we are wondering if this type of m.s. Is being concidered for the procedure. We would greatly appreciate any information anyone can give us.

Reply
Orchid 5, Community Member
2/ 6/11 6:24am

I am PPMS too.

I have read many articles (from European countries) showing their great doubts about this theoretically wonderful 'surgery'.

So I safely remained apart.

Be brave, you two will find your way through PPMS...

Best regards,

Orchid 5

Reply
UR1SWEETP, Community Member
6/23/11 12:44pm

My husband (47) just had the new CCSVI procedure in March, 2011.  His veins were 75% blocked.  His coloring and cognition have improved.  He is still in an electric wheelchair and has his other symptoms, which are continuing unabated.  Would we do "the procedure" again?  Yes.  Though we did not experience some of the more dramatic reported results (i.e., coming in in a wheelchair and leaving the hospital skipping), it really is the little things, and even just those two things being improved is a blessing.  Onward and upward!

 

Reply
Carolyn61, Community Member
8/ 3/10 6:46pm

i was diagnois in 12/07, since then i been spiraling down. i keep telling myself, ican, i will,i must. i believe i'm gone walk again, i have to believe or i'll give up.  i'm gone start therapy soon. i hoping for great improvement. i ask myself why me, why now. i'll be 50 in year, is'nt that when life begins?  for some of us. until then i want to know how to deal with it how to accept it. i don't want to be a burden to my children or no one else. i don't go  no where except to the doctor and my neighborhood walmart. well i do know this i did'nt get this because i did something so wrong that  God had to punish me now. i have my good and bad days. on my days i just cry and wish f or death. please give me some suggestions on what to eat or take to increase my health.

Reply
Donna Jo, Community Member
8/ 3/10 7:38pm

ok here is what I do and take:

 

yoga, chi gong ( tai chi breathing), swimming ( it doesnt hurt when you fall down in the pool!) walk in the shallow end, practice marching, tightrope walking etc.. , ride my eliptical,walk my dog when my legs feel good,  massage, physio, acupuncture. My calendar is filled with stuff I do now.

 

things I take:

 

vitamin B12 shots, at least every 3 weeks- I swear they help with fatigue.

 

Good Multivitamin

vitamin d- 3000 IU  softgels

borage oil,

Omega 3

grapeseed extract

b complex

lethicin

CO Q10

 

(I put all these in shooter glasses and it works great for me!)

 

I also take wheatgrass every 2-3 days or so, but not on a regular basis.

 

I am currently doing a : Dr. Miller Holey Tea cleanse. I believe it is good to cleanse our systems every so often to clear out the built up toxins.

 

and of course I like a glass of red wine, (ok maybe a couple ) in the evening!

good for your blood they say~

 

I try to 'Eat Clean'  look up Tosca Reno..

I don't eat red meat or pork .

 

Use the internet to search and learn. There is a wealth of information here.

Also, research CCSVI  - if you are on facebook, look it up there, lots of support, lots of great results of people who have had it done, I'm still waiting my turn!

and most of all....... stay Positive, yes, it sucks, I fell down the other day and am sporting abunch of road rash on my face and knee, but hey nothing is broken and I am ok.. it could be worse ... just be happy you don't have ALS..

now that is a nasty nasty disease, that is what I always tell myself.

Cheers

Donna

 

 

Reply
leslie, Community Member
6/21/11 3:17pm

dear caroline, I was diagnosed in 2000 at age 50.  the mayo clinic diagnosed it as ppms in2008. I take vit d b12 and fish oil. I use a walker, a cane and a wheelchair, depending on the situation.  i swim 3x a week for exercise.  I go with my husband on photo assignments.....we try to take short vacations....i like to garden but it's difficult so i use a potting bench and my children to plant flowers....my kids are good about making my bed and I'm good about not complaining about their music!  I do as much as I can....I don''t complain and you'd be surprised at how your children willl respond to you!  Try to do something special for them....they'll remember and perhaps respond in kind.  I wish you happiness.

Reply
leslie, Community Member
6/21/11 3:17pm

dear caroline, I was diagnosed in 2000 at age 50.  the mayo clinic diagnosed it as ppms in2008. I take vit d b12 and fish oil. I use a walker, a cane and a wheelchair, depending on the situation.  i swim 3x a week for exercise.  I go with my husband on photo assignments.....we try to take short vacations....i like to garden but it's difficult so i use a potting bench and my children to plant flowers....my kids are good about making my bed and I'm good about not complaining about their music!  I do as much as I can....I don''t complain and you'd be surprised at how your children willl respond to you!  Try to do something special for them....they'll remember and perhaps respond in kind.  I wish you happiness.

Reply
Dave, Community Member
8/ 9/10 1:27am

I have primary progressive MS and it took a while to figure it out since I have a long history of back injuries and degenerative disc disease. I take vistaril to manage nerve twitching, percucet to mange pain and they recently gave me some lyrica to relive some nerve pain. Different things work for different people so trial and error becomes part of the experience. The vistaril works for me and percucet works, I am not sure if the Lyrica is doing much. I was a very active person and along the way to figuring this out I tried every form of excersize, physical therapy, alternative therapy, acupuncture, chiro, pilates, yoga, shiatsu, rolfing, tia chi, chronic pain coach, hypnosis, massage therapy and finally was diagnosed with MS after becoming inactive and housebound for months now. I worked on my nutrition , with nutritionist and one that has worked with MS people, recommended 2400 units of vit E, 5 grams of Lechithin, and 2 tablespoons of cod liver oil daily, taken together before bed and to be sure not eat a few hours before. This is in addition to other nutrition recommendations including, no dairy, no gluten or grains, no caffein, no sugar or forms of artificial sweetener, no fruits, the recommendations she has are protein from meat or eggs - 3 palm sized portions and 3, 1/2 palm sized portions in between meals, beans or legumes 1/2 cup 3 times a day for fiber and acts as a binding element for items that collect in the liver bile, such as toxins built up from medications and undesired items. all the vegetable you desire, corn is not considered a vegetable. No rice, potatoes or breads. Nuts and seeds up to desired levels, Water is the beverage. This what she recommends, it is fairly easy as you get adjusted. You can do whatever you want, her contact info. is www.karenhurd.com if you want to watch some free information she has on her site. She has nothing to sell other than consultation, she does over the phone too. She has these recommendations for most. I have challenges eating that much right now, however, when I did eat on schedule as much as she recommended, I felt really good and actually lost weight. My doctor said good nutrition is always a staple to good health, however, he reminded me that MS has no cure. I have seached extensively and learned so much, I have read many books on MS, studied the ABC treatment drugs so you can always email me too, djprieve@yahoo.com

One item that developed for me is a heat or temperature intolerance and a dr I recently saw who has ms himself said that is a hallmark syptom of ms.

 

Wishing you the best!

Reply
DBMWALKER, Community Member
8/15/10 1:34am

  Wow, thanks everyone for all the comments. I have suffered for the last ten years with, 1: "Reiters syndrome" nevermind it's now, "Rheumatoid arthritis" whoops it's "Low vitamin D levels" Oh wrong again it's "fibromyalgia and Irritable Bowel syndrome", wrong again. Lost my sight in right eye two weeks ago and then two days later hearing in right ear. Both have returned and now scheduled for a MRI of head and spine and finally they are listening to me about all my symptoms. Trouble walking, left hand shaking getting worse, pain scattered throughout body, severe fatigue, but the worst is the "Hug". It constricts my chest so bad I can hardly catch my breath. Haven't received formal prognosis but Doctors (three so far) are saying it is probably PPMS and I should be prepared for the news. How? What suddenly knowing the pain is from this and not that makes it all better? I'm 56 year old male. I don't really care what it is I will do what I do. Exercise when I can, keep my weight down, take my vitamins although reading the comments I plan to double my Vitamin D from 2000 units a day to 4000 to see what that does. The rest, from all the research I don't really see a viable treatment for PPMS. The best thing is to keep my head up. Told my sister at least now I can eat all the bacon and deserts I want. She asked why and told her I would rather die from a heart attack than PPMS from what I read. Oh which reminds me. Does anyone else get "False Heart Attacks"? I get the heart attack pain ie: crushing chest pain, pain down left arm, relieved by taking nitro pills but EKG's and all other tests show no involvement by the heart itself. I haven't seen anyone else mention this so wonder if this is normal for MS. I mean they have even gone to the trouble of running a scope into the heart itself and see nothing that would explain the events. Any help would be nice.

Reply
Scoobytim, Community Member
8/15/10 7:12pm

Hi, re false heart attacks, yes I know them, and suffer from cramps which occur in the winter, with low seasonal temperatures. The first time it occured I when straight into emergency fearing a heart attack, but fortunately no. As time has gone by and the frightning and painful problem recurred with increasing frequency I was eventually prescibed magnesium, taken orally, initially over a period of time, 3 months. I suffer secondary progressive, but I don't think that this is important.  

Reply
DBMWALKER, Community Member
8/15/10 8:11pm

  Thanks, I have been taking medication for stomach acid anyway. This has been occurring for a few years. The first time I was in ambulance and after 3rd nitroglycerin tablet the pain went away completely. Since then has occurred quite a few times and since the nitro works I have a prescription for it. My question is does anyone else have this? I mean there is no difference between typical heart attack symptoms and this. The cold sweat, chest pains, left arm involved, responds to nitro, but no actual heart involvement just the pain. I don't typically get cramps and I feel better in cold weather. Well cold for California which is 45 in the winter where I am at. Just curious if this is related to MS?

Reply
JESSICA, Community Member
8/20/10 10:11am

HI DONNA I HAVE PPMS IF YOU DO NOT FEEL THAT YOUR  THE DR.S ARE HELPING YOU AND JUST GIVING YOU THE RUN AROUND WITH NO STRAIGHT ANSWER YOU HAVE TO WRITE THING DOWN THAT YOU WANT TO ASK AND DO NOT LET THEM MAKE YOU FEEL YOU DON'T KNOW ANYTHING BECAUSE YOU DO YOU HOLD THE KNOLEDGE TO M.S JUST LIKE THE REST OF US WITH MS.THEY ONLY KNOW WHAT READ WE FEEL IT EMOTIONAL AND PHYCICALY DONT LET THEM MAKE YOU FEEL LIKE YOU KNBOW NOTHING AND THEY KNOW EVERYTHING. THEY MAY KNOW MORE MEDICALY BUT WE HAVE THE M.S I NOT SAYING BE RUDE JUST CONFIDENT IF YOU STILL DON'T GET ANY WERE YOU NEED TO FIND A NEW NUEROLIGIST. I HOPE THIS HELP GOD BLESS  P.S THE LIKE TO GO STERIOD HAPPY WHICH IS NOT TO GOOD (ALOT BY IV ASK THEM ABOUT IT)Smile

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Chris, Community Member
10/ 4/10 5:16pm

Hi,

 

I've read many of your postings and I found them touching and helpful. Thank you. One conclusion I can draw is that the disease affects everyone differently, so there's no reason to be discouraged by another's failures or regression. Please take that into account before you read this.

 

My mother has PPMS. She was diagnosed in 1998, but had symptoms years before that, I'm told. She has been bedridden for the last 6+ years and has been a quadriplegic for 3-4 years now. Her husband of 22 years (my stepfather) and her grew apart emotionally during her battle and he strayed. As a result, they divorced and I (an only child) am solely responsible for her now. I don't have the burden of physically caring for her: she has a live-in person, weekday and weekend person to provide her needs. Needless to say, its all very expensive and finding good people is near impossible. It has been a nightmare although (knock on wood) we seem to have some measure of stability now.

 

Mentally and personality-wise she has also regressed, particularly in the last few years. She's kind of like a child who retains her adult memories. Recently, she's become harder and harder to understand and it's often only my knowledge of what she might say in a situation that allows me to guess what she's trying to communicate. Unfortunately, as her mind goes it seems more and more we'll spend five minutes trying to figure out what shes trying to say only to find it's about nothing more than a commercial on TV.

 

I should note that she never took any kind of MS drug, and judging by many accounts on here, that was not necessarily a bad thing... perhaps just saved money. She tried many, many forms of natural therapy but with little to no success. At least she's now open to medication to ease her discomfort and rest and improve her mood.

 

Fortunately, she does have some income stream: alimony, SS, disability for a while and a good 403B (401K). However, her expenses are such that we will eat through it fairly quickly and because she had to retire early, it's less that what it would have been. Like anyone planning retirement, I have to predict how long the money is needed and try to parse it out accordingly. Please understand, I'm not trying to be morbid, but all the information I find on the net is not helpful. It seems geared towards making people hopeful and putting a good spin on the situation.

 

The reality is my mother is 61, quadriplegic with significant muscle atrophy, can barely talk and I am to believe her life expectancy is relatively unaffected? If anyone knows of a place on the net with REAL facts, non-sugar coated, that can help caregivers and loved ones, I would appreciate it. I am trying to plan for her comfort as long as possible -- I dont want to be too stingy with her money, nor do I want to blow it all and have to put her in a home down the road.

 

Thanks. If you have resources, please email me at: clash (a)(t) iglou.com

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Ann, Community Member
7/20/11 10:09pm

I wish you all strength and compassion for yourselves, your loved ones and caregivers on this most difficult journey.

 

I think you will find answers to more of your questions at these links. 

 

http://www.nationalmssociety.org/about-multiple-sclerosis/living-with-advanced-ms/index.aspx

 

On this page, please find the document listed below the main article and video, called "Advanced MS: a guide for families" .  

Print it off and refer to it often as things change.  

 

for those in the UK, there is a similar link:

http://www.mssociety.org.uk/downloads/MS_Essentials_16_Support_for_people_severely_affected_by_MS_-_web.8df5f599.pdf

 

Read both, as each one has important info.

 

to read more about Palliative care (things to make the person feel better, but do not count as a treatment or cure) :

 

http://www.mssociety.org.uk/about_ms/care_and_support/support_for_people_severely_affected_by_ms/palliative_care.html

 

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sps2045, Community Member
10/25/10 7:43pm

Unfortunetly there is not much the MS Doctor can do for progressive MS. I am now taking LDN since 2 years of tysabri infusions didnt do a thing for my progressive MS and lately ambian shots didnt work either. I heard about LDN here at Healthcentral

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troy schlapper, Community Member
10/29/10 6:48am

HI DONNA MY NAME IS TROY S. I WAS DIAGNOSED IN FEB OF 09 APPROX 4 MO AFTER THE FIRST SYMPTOM AS OF 10\10 I AM CONFINED FULL TIME TO A HOSPITAL BED ON BAD DAYS A ELECT WHEEL CHAIR ON GOOOD I HAVE LOST ALL USE OF MY BODY BELOW THE CHEST AND AM LOOSEING THE USE OF MY ARMS DAILY I START EACH DAY ACCEPTING NOT WHAt could i do this time last year that i cant do now but rather what could i do yesterday that i can no longer do!!!!!!!

 

yes this is a very tramatic and dramatic case of ppms i tell you this so i can tell you this this has been one of the best years of my life i have been abel to open my heart my mind and in my case my life to my FAMILY AND FREINDS THEY ARE WHAT GETS ME THRU EACH DAY MENTALLY AS WELL AS PHISICALLY  so whaT IM SAYING IS YEA IT SUCKS BUT IF YOU LOOK THERE IS ALWAYS A BRIGHT SIDE IF YOU JUST LOOK AND EMBRACE IT GOOD LUCK TROY!!!vwtroy @yahoo.com 

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billw_willy, Community Member
11/ 6/10 4:43pm

The VA neurologists now 0nly think I have PPMS after denying anything was wrong for the last 40 years--very long story at age 65. My MRI's (1984-2009 Univ. Miss. Med. Ctr. and Mayo in MN) show no plaques and rarely does PPMS show none. PPMS is a slowly developing type vs. the other types that have some steroid meds that stop sudden exacerbations as those types are prone to do that often. My doc said there is no treatment protocol for PPMS, only for symptoms. My meds include many more than yours just enough to keep me on a cane, wheelchair in hospital and hand controls in my car. Stay active and healthy like you are and as my support group members would say, "MS does not make you immune to other diseases." Beware of quacks.

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Felicity, Community Member
4/12/11 5:36am

Hi - I was dignosed with MS in 1991 and only earlier this year that diagnosis was refined to PPMS. In 20 years the degeneration has been quite steady but quite slow. I hope this is some help to you. There's no remission but at least you know where you are with it! I don't take any "MS" drugs but occasionally take Baclofen.

Typically I have few lesions, no optic problems and no cognitive difficulties but walking is pretty rotten now - ataxic and tiring. No wheelchair but always two crutches or a walker and very cautiously because the gait is ataxic.

On the plus side though - I enjoy my life because PPMS gives you the chance to adapt slowly. For example, I used to ride horses but now a drive a little pony; I used to be a musician but now am a local historian - these changes take time and PPMS does give you the time.

 

I don't try to push myself physically too much or worry too much about what cannot be changed; it's important to stay in the normal weight range; I have a weekly massage which helps spasms; I can drive a car and I do the admin for our business so have enough real work. Sometimes it is the loss of employment which is more devastating than anything else.

 

My attitude to PPMS has been to live with it, move round the bits I cannot do any more and not regret the loss too much because it doesn't help at all. 

 

PS I am now 56 and was diagnosed when I was 36. 

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Paul, Community Member
6/13/11 10:58am

Ask about low dose naltrexone, you need omega 3 only not 6 and 9, and you could do with vitamin D3, vitamin E, vitamin B12 and vitamin B complex and thats just for starters. I have PPMS i was diagnosed may 09 but have had it many years. My EDDS score is 6.5.

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sps2045, Community Member
6/13/11 11:28am

My wife has progressive MS and was scheduled to be  evaluated for a clinical trial for adult stem cell transplatation on may 18th but she started eating macrobiotically the day after Easter. When we went in for the evaluation she was no longer needing her crutches or wheelchair. She was still using her leg braces but was doing so well they said she no longer qualified for the trial.

 

The MS doctor said if she had not seen it with her own eyes she would not have believed that a macrobiotic way of eating would be so helpful.

 

At the present my wife no longer uses any support including her leg braces. She also does not require Oxygen and she no longer chokes when swallowing.

She is now able to drive again as well.

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Donna Jo, Community Member
6/13/11 12:32pm

Hi there!

 

Please tell me more about eating macrobiotically.  I will look it up and see what  I can find on the Internet too.  I do believe that eating has alot to do with our health and would love to learn more.

Sounds like your wife is doing amazing. That is so nice to hear.

Thank you for sharing this.

Donna 

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sps2045, Community Member
6/13/11 10:11pm

Donna,

you can look at this site:

http://www.kushiinstitute.org/

 

I sent my wife back East to Mass to lear how to cook macrobiotically in 2006 but she didnt stick with it and her MS got worse since then. She recalled how good she felt so decided to stick with it this time.

 

We are using the services of a macrobiotic counselor this time because she forgot how important the remedies were and could not recall them. Judy Mackenney had 4th stage cancer over 23 years ago and she is still living because she eats this way.

 

Non-Hodgkin’s Lymphoma

Judy Mackenney

 

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sps2045, Community Member
6/14/11 2:19pm

My wife, Jenny said if you want to ask her any questions just email her with your phone number and a good time to call you. The email address is steve6754@aol.com

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saeed, Community Member
7/20/11 4:04pm

my mom was diagnosed with ppms in 2000. for the first5 years she was taking baclofen and amantadin(not sure about the spelling). now she takes azaram(azatioprin), baclofen, folic acid, calcium d, and B complex, but she is getting worse year by year. now she cannot walk at all. what is the best treatment for this type of ms?

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abs2k10, Community Member
8/ 9/11 4:55pm

As a man with PPMS this is very hard to deal with.

I can't run after my young children, can't play sports with the older

ones. I can't do work around the house because I can't walk or stand

straight.  My hands and feet are problematic. My vision a is bad due to

double vision, rapid eye movement and blurred vision. I have tried IVIG,

lyrica 50mg *3 and gabapentin 300mg * 3. I am about to start fingolimod.

As an optical network engineer, I have to go back to work. A six figure

salary cut by 50% due to long term disability is killing me. Our two

youngest are special needs too. I have to return to work. I need

some help. I know there is no cure For MS but I would like to walk

without an aide, look at a computer screen without it jumping all

over the place and to be able to grasp a fiber optic cable, not the

big ones under the road but the tiny ones in my lab

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Felicity, Community Member
8/18/11 6:35am

I've grown quite cynical about the medical input - too often it seems to me to be a ruse for a doctoral student or a college to gain a soft grant - the money furthers their careers but doesn't help MS sufferers. The existence of protocols such as standard neuro tests, MRIs as well as referrals to social support groups (which are good) masks the fact that the patient is on a long journey - one which enables the neourologist to tick the boxes and cover themselves from lawsuits - but which cannot be a perfect fit for each person.  I've had PPMS for 20 years and these days, apart from checking in every five years or so for an MRI and re-evaluation of medication, the best strategy I know is to live in the spaces around MS - before they too are compromised. Very much a "seize the day" attitude with only moderate expectations for medical studies. I've seen dozens come to nothing in 20 years. I'm still hopeful but it's also important not to waste time and chances while you still have them.

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Strong, Community Member
2/28/12 12:18am

Hello,

 

I just started my first infusion of Tysabri a Avonex just was not cutting the cake for me as now I am PPMS DIO'd.

 

I was DIO with MS in Fall 2008 after my eye doctor for over a year stated my blurry vision in my right eye was due to aging...go figure.  No new prescription helped the blurr.  Finally I just had it with the aging answer at 44; I could believe aging as part of it at one-time but a new prescription should have made a difference.  Finally, I just rose my little anger button and made a scene in the waiting room.  One can only push me so far despite my easy going nature.  I got to be referred to an eye specialist that day...who saw nothing wrong with my eye so ordered the MRI and BAM I had fuzzy white marks which led to an LP and so on...good thing came out of it I now had proof for my Mom despite all the years of her stating I had no brain.

 

With MS DIO I have learned to be very frank with the doctors like I have to PEE without warning at the most unopportune time; in fact if I do not go PEE right now you going to have to get a mop for your very clean office; instead of being meek in my discriptions of issues I am having.  I know some of us are taught to be discrete with people, but you know what most doctors including neuros really do not understand MS and the issues we all have because we are not cookie cutter cases that can be solved with generated medical treatments.  The symptoms are as numerous as the night-time stars and this just baffles the medical community gives them pause to run with their hands up.

 

So go into the doctor office both neuro and primary armed with your questions on a piece of paper (keep a diary bores the heck out of em) as frank as you can be and watch the tables turn.   MS is not for the weak hearted you sometimes have to put the boxing gloves on and take control.  Which I know you did not go to medical school to learn; that was the doctor's path.  But to be honest until the medical field knows what the real cause of MS is there will not be a cure or truly effective treatment.  In other words, what works for you to manage your MS I am all for it.  If it is diet, medication combos, meditation, cold baths, herbs, massage, acupunture etc...go for it if it makes your day-to-day operation and function managable.  MS is not a case book answer to treatment; it requires some creative manuaving on the patient's side; for example, grabers because the balance on tippy toes just is not an option.  However; there are medications that help but there are side effects with all man messed with and created drugs...so be your own advocate.  Speak loudly, firmly, respectfully, and straight forward with the doctors.  Do your homework on drug interactions.

 

I know being strong when you just are physically whipped is the hardest thing to do, but in the long run it can be your salvation in the topsy turvy world of MS.  MS is my mate an adventure; we just do not agree most days.  I did look for a divorce lawyer but not one was up to the task of divorcing me and my MS mate.  So buck up MS is going to stay and it can really have ugly behavior which you can whine about or sit back to think of a way to overcome those ugly moments.

 

I think for me the hardiest part is the unpredictable side of MS from one day to the next; not knowing what path it is going to take in a universe that just does not understand how a stiff leg can buckle without warning and you kiss the pavement.  OMG I looked like quzo met Rocky and I think I looked worst than Rocky after a 15 round bout.

 

Through it all tears, joking, laughing I have come to accept MS as my mate.  I just wish it would put the toilet seat down then we might get along better.

 

NO MS is not a laughing matter, but without laughter I would give up and just cry my eyes dry...and gosh help me with the doctors on that one...I am sure they would lock me up forsure as the easy alternative.

 

HUGGLES to all the strong MS individuals you are special because MS makes you strong and for that we have to thank MS in a world of unforgiving moments like a curb with no rails at the front entrance of a store...and the handicapper parking is like 400 steps from the entrance.  Well 400 steps is like a trip around the world as my legs begin feeling like 900 lbs each.  ::WIGGLES her nose::

 

Yeah the world just does not understand the complexity of MS in its simplist form.  I am more than just MS>>>

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By Donna Jo, Community Member— Last Modified: 04/14/14, First Published: 06/10/08