Treatment for primary progressive MS

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

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 anniversary. 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

Shelley

 

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

 

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

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

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

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

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

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. 

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

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 

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.

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.

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

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

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

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

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.

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?

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. 

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.

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

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 
  

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.   

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   

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!!!!!!