Friday, October 24, 2014

Thursday, September 18, 2008 Lisa Emrich, Health Guide, asks

Q: Vitamin D deficiency?

Last week my internist checked my Vitamin D levels in addition to TSH levels. On a recommended range of 32-100, my Vitamin D level came in at 7.8, rather low to non-existent (above 50 is desired). My TSH was 5.1.  Symptoms associated with both of these results include fatigue, malaise, brain fog, numbness, muscle pain, and depression.

 

Physical symptoms of vitamin D deficiency include the following in muscles - mild/moderate weakness (arms > legs), pain/achiness, spasticity/cramps, and wasting. I also read that numbness and tingling in the limbs is common. Sounds a lot like my recent MS symptoms plus the others above.

 

My question is: for those who have been deficient and started supplemental therapy, how long was it before some of these symptoms improved or resolved?

 

Any advice or encouragement welcome.  I am one sad, tired, achy, numb, spastic, weak, brain dead person these days.

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Answers (35)
Merely Me, Health Guide
9/22/08 8:44am

Hey friend

 

I absolutely do not know the answer to your question but just wanted to see how you were doing.

 

And I did comment on Dr. Gross's most recent article  and asked him about what you are going through and if he had anything to add.  You can check out his response by clicking the link. 

 

I have never had my Vitamin D levels checked...should we routinely be doing this if we have MS?  Maybe you could write a share post about all this. 

 

Hope you feel better soon.

Reply
christine, Community Member
10/18/10 6:25pm

Little background.....I am 39yo and have been having (what I thought) was carpal tunnel, bursitis, tmj, sciaitica, etc. issues since my early 20's..Been to many doc's but my symptoms magically go away on their own after weeks with no further intervention..I've been to a hand  & shoulder specialist, rhuematologist, family doc, ob/gyn orthopedic doc and finally the neurologist on and off since.  I'm concerned that trying to get the best medical treatment for my symptoms may have caused me to not be diagnosed with anything in particular. My most recent episode has lasted over 2 months and got progressivly worse.  I am having numbness, tingling, burning and PAIN in my left hand with no relief from meds.  My neurologist did what seems like a quick exam including questions and reflex test and his diagnosis included an MRI to check for MRI leasons (sp?).....Why did he jump to that conclusion so quickly and not consider a possible pinched nerve in my neck??  Anyway, here are some of my symptoms that i've gathered from several different doctors at several different times in my life.......Pain, numbness, tingling, weakness & burning in left arm. 

TMJ problems, Low (27) Vitamin D blood level, Depression (including adhd symptoms, procrastination, confusion, trouble organizing myself)  Fatigue, carpel tunnel sympoms, bursitis symptoms, Astygmatisim (??) Ganglion cysts (??)  periods of very frequent bowel movements (up to 6 per day) folowing constipation, joint stiffness and pain etc...

Just wondering if any or all of these symptoms may be related? Any advice would be appreciated

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christine, Community Member
10/18/10 6:35pm

forgot to mention a few other long lived symptoms including an elevated ana level with a normal sed rate and when i do the dishes in warm water, my affected hand starts tingling, going numb and changing sensations while my other hand remains normal.

Reply
too stressed, Community Member
2/19/12 12:08am

Unfortunately, I could have listed ALL of these things and (def not bragging) added a bunch.  I have Raynaud's, which is what causes the sensitivity and change in my fingers and toes.  Change in temperature (or even a sudden change in use (feeling) causes some or all of my fingers on one hand (sometimes one or two toes) to turn bone white, then gradually the blood will start flowing back.  It will then turn bluish to dark purple, and slowly become normal again.  While this happens, there is numbness and tingling. Raynauds does go allow with Autoimmune conditions, which I have numerous.  Too many to list.  I am at this point, being checked AGAIN for Lupus, MS, Scleraderma, vascular disease, etc. The orthopedic doc said the MRI showed small white spots on my brain, but he was considering it as normal, due to my age.  I am 55 years old, but I feel like I am 90.  However, he sent me to a Neuro specialist that thinks "OUTSIDE THE BOX."  The Neuro had the MRI results faxed to him, and because it states that  I have been battling these problems since before 1992. That is the year that I first went to a rheumatologist to try to find out what the problem is.  He diagnosed me with Fibromyalgia and 3 different types of arthritis at that time.

 

I have read alot of these post and can totally relate to so much of this.  I have been diagnosed with sooo many conditions (most all relate to Autoimmune) and have been under the care of MULTIPLE specialist, but they each will treat me for that particular problem, but NONE can seem to find the actual culprit causing them.  So many doctors don't really know what to do with me (or what to treat at that time) due to over-lapping conditions, that they sometimes just give up on me.  They can run 3 or 4 patients in and out (therefore make more money) by the time we can go over mine.  Thus gives them reason to give me cause to find a different doctor, ie: my PRIMARY physician just did this and I've been with him for almost 5 years...."I am not going to schedule you anymore appts. since you are being taken care of by a number of specialists.  If you need me,...you know where to find me".  Excuse me, but correct me if I'm wrong.  The PRIMARY dr. is supposed to be monitoring my overall healthcare and keeping up with what the other drs. are doing with me.  My orthopedic dr. was concerned about my feet being purple when he walked into the room, and asked who monitors my blood pressure.  I said no one does.  He asked who my primary dr. is now, so I told him that story. I told him the story, and he said....Sounds like he gave up, but I am not going to.  I want to get to the bottom of this and try to help you.  So i guess we'll see what happens with this NEW Neurologist.  So far, my bloodwork came back with B12 deficiency, requiring an injection every week for 1 month, then bi-weekly for 1 month, then stay on it once a month.  Vit D3 was low, so I have to take 2000 mg a day.  Last week I had two Evoke tests done, a VEP (visual) and a BAER (auditory), and this Mon. I will have three MRIs, the neck, mid-back, and lower back.  On Wed. I will have an NCV (Nerve Conductivity Velocity) and EMG (Electromyography) to test the muscles.  OUCH,,,been there done that!!! Hurts so bad, I don't want to go!  I have to take the actual disc of the Brain MRI, because this Neuro dr. wants to read it for himself.  He is concerned about the white spots that the results state are there.  And so it goes, TO BE CONTINUED.........

 

p.s.  I APOLOGIZE FOR THIS BEING SO EXTREMELY LONG, BUT IT IS UNUSUAL FOR ME TO FIND ANYONE THAT CAN RELATE TO BEING SICK & TIRED ALL THE TIME FOR MANY YEARS NOW, AND STILL NOT KNOW WHATS THE EXACT CAUSE.

 

Reply
michaela, Community Member
6/ 9/12 3:55am

 

In my thirties I developed extreme muscle weakness and depression...it was in all my limbs, but my hands were affected the worst..I could not make a fist, and I could not hold something small, like a needle between my finger and thumb... I was never diagnosed, because i have a terror of hospitals, although there came a time when it was so bad, I actually thought I was dying!  I was unable to stand up without assistance and could not climb a flight of stairs.

Then very gradually i semed to improve..there was no reason that i could see for it, but i got back to be able to walk,and could hold a needle again, which was essential for my job at the time (although I had to concentrate on keeping thumb and finger together)  this lasted for about 6 months, then suddenly 2 days ater my birthday I had a total relapse... I could not even get out of bed and i was terrified! I tried to think of any outside factor that could have caused this, and something occured to me.

I had at this time been a vegan for 15 years  ( I still am a vegan) I was particularly fond of a yeast based pate that i ate regularly...also i ate yeast extract spread such as marmite every day to keep my b vitamins up. Six months previously.when i had started to improve, my work had become scarce, and so  I had cut back on my more expensive food.the yeast pate was one of these things, as were several TVP products...also containing yeast extract.

For my birthday, my mum had sent me some money, and I'd bought some of that pate and eaten a lot of it in one day...I imiediately removed all yeats products from my diet. Within one week I was in perfect health!  this was after 5 years of illness!... I know 100% this is not a psychological thing, because since then i have had slight relapses, and sure enough each time I have tracked it back to having unknowingly eaten something with a yeast product in it.

Bread is fine, by the way.... it's just things with the extract in them.

I now take b vitamins that are not yeast sourced....I also have recently started to take a vit D supplement... not related to my previous illness, but i am very fair skinned and avoid the sun, so I was told by my doctor that I should do this.

I hope this is of help to someone...I also have a close friend who was a doctor and also a vegan. She was diagnosed with MS in her early 40s...when i met her she  could barely walk.she stopped all yeast products and was much improved..She also chose to have all her amalgum tooth fillings removed, and she said this also made a difference.

 

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Healthaussie, Community Member
8/ 7/12 6:26pm

Hi, thanks for your information. I hope that you are betetr now. I had a young friend- 14 years old who was always sick- tired, black under the eyes, and after many years of illness, they discovered an overgrowth of the yeast organism- candida. No, she has a special diet, looks healthy- but who would have suspectesd this. Vitamin D levels can also be linked to T - Cell activation and Chronic Fatigue. Many doctors are not taught about Vitamin therapy unfortunately. Mine tells me that low Vitamin D levels and tired people seem to go together. How helpful is that?

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Kathyl, Community Member
12/ 7/12 6:52am

Sounds like the story of my life.   I am 54.  I was having trouble swallowing and went for a camera down my throat test.  Whatever they call it.  The doctor found nothing unusual till he got to the beginning of my small intestine .  My small intestine was swollen, inflamed and scarred.  He biopsied and discovered I have Celiac disease.  An autoimmune disease that is triggered by gluten.  I have been gluten free for 8 months and I have no more of all those horrible symptoms you've listed!!!!!!!!  Try going gluten free for awhile and see if you feel any better.  I was super sensiive to even products labeled gluten free.  Some have cross contamination.  Try eating even without those products.  Good luck.

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Debra, Community Member
12/ 7/12 4:02pm

I was just diagnosed with a Vitamin D deficiency and over one year ago with auto-immune Hashimoto and a month ago with Meniere's Disease.  I think you are right with an auto-immune you never know what can and will go wrong and I could of written your aritcle myslef right down to the letter.  I feel for you I am in the same boat with many specialists and no one seeming to look at an integrated solution or care plan.  I have my 20 year physician retiring in January and I am contemplating a good internist that I can go to since I am already diagnosed.  I also have a degenerative disc disease in the spine for neck and mid-back and this is where my numbness resides specifically in the right spine to shoulder blade.  I just saw your posting from February by chance and thought I would write.

 

 

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Maris B. Mohr, Community Member
10/27/10 5:51am

Hi Christine,

From my experience before dx, I would ask or demand to be checked specifically for MS and/or FMS. You sx sound so familiar and I've got both.

 

Feel better and don't worry.

 

Peace & Serenity,

Maris

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Kate548, Community Member
11/22/10 7:55am

Well I would say that you should start taking some Vitamin D right away. And especially if you live North of the equator where there is less sunlight!

I was experiencing numbness in my right foot and then it spread to my left foot. I have had digestive problems in the past too which led me to suspect that it was a deficiency of some type. I went to a Neurologist who asked me a bunch of questions and sent me for an MRI. I have yet to get the one done on my brain. But I was not receiving the help that I really required between a bunch of different quacks (I call Doctors quacks because most of them are idiots).

My numbness was spreading far too fast so I decided to do some research on the internet and found that there is definately a link between MS and low Vitamin D levels.

I then got some Vitamin D and took 2,000 UI and found that within about 4 hours time the new numbness that had started appearing in my hands had suddenly disappeared!

I then decided it was time to request that I got a Vitamin D blood test done only to find that the quack I went too "didn't want to do the test "saying that "it would cost our healthcare system $145.00 and that that was too much money!"

I then asked her, "So my life is not worth that amount?"

She then decided to do the test after I added, "Well I do have digestive problems so I would like to get it checked please!"

We are talking about the Canadian Healthcare system whereby some quacks(doctors) would rather refuse you a test because they say "it costs too much money" than the prospect of doing some volunteer work for one or tow afternoons a month!

I had also told the silly quack that, "An MRI test costs a hell of a lot more than a simple blood test does!"

And this is frankly just one more reason why I don't call quacks doctors!

Since no one in Africa gets MS until they move to somewhere that the sun doesn't shine that much there is one big key there....which is the amount of sunlight that you are getting....and hence the amount of Vitamin D you have in your body!

You may wish to try taking Vitamin D if you have any auto immune problems too! Vitamin D regulates your immune functions.

So please get a Vitamin D blood test to see where your levels are.

Reply
kareng gosling, Community Member
5/ 9/11 6:23am

I have some of the exact same symptoms as you and I am in the process of trying to get it diagnosed. Specifically my symptoms are:..brain fog, procrastination, confusion, speech not as flowing. Muscle weakness and ligament weakness, night sweats and tempreture sensitivities, I sweat easily, fatigue due to muscle weakness I think. Whites of eyes can be red and pain behind eyeball feeling bulgy slightly and eyelids hesitating to close in morning, when I get up.

periods of head Hair loss and body hair is minimal

 

Astgmatism that varies but definately started when that the rest started.

Sciatica, can be chronic, and element of dehydration. Loose bowels, 2 movemments a day where the second is very loose and recently a bladder infection for 7 weeks due to yeast....I have mild IBS..it seems to be from Milk, however, I am on lactofree milk and it still flared up recently

 

I found that drinking water, 8 glases a day, (no juices, only pure lemon for a change) lifted the muscle weakness, lower back tenseness and Sciatica...I was free of these for just over 2 months and was elated!!  but then this happenend...

 

I noticed I am nervous, I jump at noises which isnt like me, I feel anxious when there isnt anything to be anxious about, I can pace around and waste energy.. I have had minor palpitations and the marked thing was during thE palpitations I felt something go rushing around my body, it produced nerve sensitivities in ring and little finger of left arm... which led to a feeling of stiffness in fingers whilst my muscles all started to feel weak again . The following morning I was stiff again, and Bursiitus occured, the dry eyes and eyelid problem was there...stiffness that was burning in back of lower neck and shoulders, where the tip of one was very painful..(where the tip of the shoulder meets the arm joint.) and nerve pain?..in right shoulder...feels like it is sore and as if something is rubbing it sore when there isnt anything there...

 

I have had all of the symptoms for 8 years, this last attack was the most dissapointing as I thought It had gone, (wishful thinking) and the bursitus was the worse it has ever been...it has remained  undiagnosed so I am going bck tomaorrow again to the Docors......

 

I am questioning whether it is any of the following:

Hyperactive thyroid, IBS, perhaps some sort of Rheumatic condition, or gout, or Diabetes 2 or some sort of Sugar related problem, allergies which I will ask the Doc to test for and lastly, a yeast bacteria....

 

I remember I had a sugar addiction awithin this timespan....

 

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m, Community Member
9/10/13 10:08pm

sounds like thyroid trouble to me. this post is two years old... i hope you have figured it out by now.

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Kate, Community Member
2/19/12 5:25am

If you've got a digestive problem since you said you had many bowel movements I would check into whether you have IBD as the source of your problems. If you do have this problem it can be the root of all your other physical problems. I have IBD and now have numb feet and a bit in my hands too. I have been taking 2000 IU of Vit D3 per day and still my Vit D levels are too low!!

I have been to many Gastroenterologists over the years and none have mentioned this.....the other day I was at the bookstore and read in a book there that "those with digestive problems (ie. Crohn's etc.) do not absorb Vitamin D readily because of the inflamation and should lay under tanning lights that are UVB type so that they will be able to obtain sufficient levels of Vitamin D!"

I could'nt believe what I was reading actually and was shocked to read it especially after suffering for this long with numbness of the extremities! (1 1/2 years now!) So Gastroenterologists don't seem to know or care that their patients are deficient nutritionally, and they just say, "Ahhh, duhhh????!" when asked what is wrong with one's body! I once read that Vitamin D should actually be called "The Master Hormone", because it controls so many processes in the body! It may even be the reason why people have MS! I say that because most MS cases are found in areas North of the Equator where sunshine levels are low.

I hope this helps you in some way to get back to normal!

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kimnav76, Community Member
5/18/12 9:10pm

i was diagnosed with a tarlov cyst in the sacrium area of my back...i have all the same symptoms as u...i have read up that the cyst can cause all of these issues..shoulder pain, sciatica, if u have ganglion cysts more than likely u have a tarlov cyst..if injured and many people have these cysts there whole lives and never know about it..but if injured can cause wide spread pain depression...its rough..I hope this will or can give u other options to look into..

 

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Momster, Community Member
7/18/12 10:57pm

I just discovered that I have a vitamin D deficiency and am so empowered to know that diet and sunshine alone can cure my muscle aches, weakness, depression, irritability and memory problems!! You too, can feel better if you incorporate vitamin D rich foods and at least 20 minutes in the sun daily. You have to do it though, taking a vitamin supplement will not be enough.  I learned the deficiency can lead to immunosuppressive conditions and auto immune disease which may be why you are dealing with a diagnosis of fibromyalgia and some other vague label that does not get to the heart of any true diagnosis!!  Another issue relating to your digestion, could be gluten intolerance, otherwise known as celiac disease, or Crohn's disease, which is related to Vitamin D deficiency.  It is all interconnected.  Have you tried a gluten free diet?  I know how hard it is to change a diet. I am like a robot when it comes to food. I eat the same things over and over and complain about how bad I feel, but I have had it with the memory fog, and depression and am dedicated, and I mean life changing dedicated to changing my diet. Why do I allow myself to suffer??? I thought I had some horrible disease and all was hopeless, but it is just my diet, yeah! I am thrilled to know the reason the doctors cannot find something wrong is because I am healthy, but deficificient in Vit D. Research Vitamin D, and gluten free diet and do it, stick to it and get out in the sun, I hope you feel better. We all should be healthy and happy!!  Oh, oddly I live in the valley of the sun, Phoenix, and feel my worst in the summer, go figure? Be sure to incorporate dairy with each meal so that you can aborb Vit D.  Very important, and so much cheaper than searching endlessly for an illness.  

http://www.google.com/url?sa=t&rct=j&q=&esrc=s&frm=1&source=web&cd=1&ved=0CGkQFjAA&url=http%3A%2F%2Fods.od.nih.gov%2Ffactsheets%2FVitaminD-HealthProfessional%2F&ei=2HQHUPu1G4ak8ASWnPmbBA&usg=AFQjCNEt7zbgdoxW0Vkacc3QxZmtjvKdKw

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Diane, Community Member
11/30/12 5:14am

Good nutritional diet is certainly important unless you have had gastric bypass surgery or anyother type of disease of the colon that causes malabsorption.

We cannot correct our Vitamin D deficiency with diet and time in the sun. 

Many bypass pts. become lactose intolerant.  We take large doses of Vitamin D

to increase our level between 40 and 60.  After we reach our goal, we still remain on prescription doses of Vitamin D.  This is for life.  Within a month and 1/2 of

increasing my vitamin D level to 40 I felt better than I have felt in years.  This was after the Vitamin D deficiency destroyed my immune system which caused me to

have a high grade lymphoma.  For 18 months following my last chemo treatment we

have been checking my Vit. D level every two months.  I am maintaining at 67,

feel great, and remain in remission.  The key to finding Vit D deficiency is labs

and doctors that are knowledgeable in proper treatment.  My oncologist had no clue. 

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Aurelie, Community Member
5/ 8/13 6:45pm
It could be. My level is 23 and I have the same symptoms as yours plus dizziness, blurred vision... I was diagnosed on top of low vitamin D with Fibromyalgia. Many doctors do not recognize the extent of this disease because it is still quite recent. Check out this link. It will give you a pretty good idea. http://fibromodem.com/?page_id=6223 I hope this helps. If you need more info you can contact me at wewel13@live.com Aurelie Reply
Milanita, Community Member
10/26/10 7:54pm

hi, i just found out my VITAMIN D,1,25 HIHYDROXY IS 124H MY PCP toll me i have to much vitamin D in my body, I have done a bone density found out a have OSTEOPENIA

on my AP SPINE AND LEFT FEMUR how can i correct it problem, i can take vitamin d or

either calcium? don't want to take medicacion? what should i do.

 

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dc3333, Community Member
7/24/11 11:13am

they should have tested your 25 hydroxyvitamin d level, no the 1,25 test.

 

http://www.gdx.uk.net/files/profile_assets/further_information/vitd_1pager.pdf

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Diane, Community Member
11/29/12 6:14am

For many years neurologists have treated MS patients with high doses of Vit. D

to curtail the symptoms.    As a nurse, I routinely see our MS patients at what is referred to as toxic levels.  Over 100 to 120.

It is true that few doctors know how to treat Vit. D deficiency.  Being a previous gastric bypass pt. from 2003, doctors were unaware that all bypass pts. would be vitamin D deficient.  Yes they would check the Vit. D. level and maybe for 6 weeks give the vitamin in large doses then have you stop.  Three years after my bypass, my WBC (immune system) went down to 3.0.   None of the doctors contacted, even in large teaching hospitals were aware of anything that could be causing my

lowered immune system.  Four years later I was diagnosed with Lymphoma at the age of 60.  Went through chemo, and the entire time questioning my oncologist about the causes of my type of lymphoma.  No one knew.  After treatment I became sicker and my WBC went down to 3.0.  Had two major infections and missed more work then when I was receiving chemo.  I asked

my computer the names of all the Vitamins and minerals that pertained to the

immune system.  I was then checked for any def.  The Def. was Vitamin D.

My oncologist didn't know how to treat my deficiency.  Going back to the bypass

clinic I have worked with a nurse practitioner and one of the surgeons proving

by labs that Vit D is infact one of the major components of the immune system.

My labs have been drawn every two months for the past 18 months.  As the

Vit D level rises so does my WBC.  In one and l/2 months on large doses of Vit.

D, I felt better then I had in years.  I maintain my level at high 60s.  Feel great and for 11 months have worked 4 days a week, 12 hr. shifts, on midnights at

the age of 63 yrs. young.  My Lymphoma was high grade, and after 21 months

from the last chemo treatment I remain in good remission.   Please read more

about what Vit. D actually does and how it can prevent many cancers.  Mayo clinic did a study on Lymphoma pts. and found that Vit. D. treatment during your

chemo could double your life expectancy.  One of our new diabetic clinics is now

treating type I diabetics with large doses of Vitamin D.  You must have your

Vitamin D level checked frequently until your doctor has determined what dose

you must take to maintain an adequate vit. d level.  This really is important for

many vitamins and minerals.   When I first suspected Vit. D. was the cause

of wiping out my immune system I said to my oncologist, please don't tell me a

simple vitamin could have kept me from getting this cancer. The only thing my oncologist could say to me is I'm sorry I didn't listen to you.  I have been horrified to find many gastric bypass pts. from other hospitals and areas of the country who have never been put on any kind of vitamin supplements.  Malabsorption is one of the things that allows you to loose weight so fast, it goes right through the body.  In fact everything goes right through, and vitamins and minerals and medications do not absorb properly.  Any person that

has difficulty with malabsorption in the intestines and colon will have the same

problem of Vit. D. deficiency.   Hope this has helped.   

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Kathy Flores, Community Member
9/24/08 6:09pm

Hi Lisa,

I have never had my D level checked but started taking a larger dosage on the recommendation of a naturapathic doctor as well as my chiropractor.  The recommended daily does is only 400 but I've done research and listened to other experts (including Dr. Oz on Oprah one day Smile who recommend taking 4,000 IUD a day rather than that real lose dosage.  I would like to think that it helps keep me feeling less weak and less numb but I have no concrete proof other than the fact that I do feel less weak and less numb. 

 

I also have a friend who does energy work and she recommended trying to get outside for 10 minutes and sit in the sun with your eyes closed but so that the sunlight can seep in through your eyelids.  She claims it gets into your blood stream much faster through the eyes.  But important to keep your eyes closed because you could damage your eyes if you have them consistantly open while looking at the sun.

 

So of all the supliments, I am a big fan of D!

 

Kathy

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Laura W, Community Member
4/13/09 7:57pm

I have been in the last year watching my Vit D levels the lowest I have gotten that I know about is 23.  I am now wondering if Vit D is part of the answer. Every time I get my level back up to 32 I feel a lot better.  Even though I have been dx for 4 years I am still in denial when I feel good.  I suggest keeping up with you levels.  When we figured out that I was low it took 8 weeks of taken 50,000 IU once a week to get it back to level.  I am now taken 2000 IU a day and I will go back this week to see if I got it back up. 

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Stacey A, Community Member
4/14/09 9:55am

Vitamin D is very important and a deficiency has been linked as a cause of MS. Also, it is important to get your hormone levels checked. Just treating hormone imbalance can help with MS symptoms. Vitamin D Deficiency is also linked to certain types of cancers.

 

Numbness,tingling, slow motor skills and digestive issues are common with vitamin d deficiency and as Lisa said can mimic MS symptoms.

 

The homeopathic doctor has me taking 4,000 IU a day right now of D3. She says that the BIO-D-MULSION Forte from Biotics Research Corporation is one of the best on the market providing 2,000 IU of vitamin D3 per drop. D3 has been found to be the most effective to take and is considered the more absorbable the then D2. I'm sure that it can be found online.

 

The vitamin d council recommends a persons levels be between 35 to 65 with 50 being optimal especially in the winter months. On the other hand 5 to 10 minutes in the sun 3 times a week can help with these levels also.

 

Just because you go to the doctor and they say your levels are in range at 32 doesn't mean that is the best level for you. That is not the optimal level only a recommended level. Do whats best for your body. The vitamin D assciation says you can take 10,000 IU a day with worrying about toxicity issues. Please get your levels checked periodically since taking too much vitamin d can do as much damage as not taking or getting enough.

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Lisa B, Community Member
2/27/11 7:52pm

You are correct. Vitamin D is a fat soluable vitamin so the most absorable form you can get is through a doctor called Bio D Emulsion Forte from Biotics Research.

 

Major clinical studies have shown you can raise levels in 3-4 weeks to above range.

 

LB

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MBM, Community Member
7/ 1/09 7:37pm

This is very weird.  I am actually a physician, a pathologist, with mild MS and recently have been very tired, and also had many GI symptoms like severe constipation (scope showed chronic active gastritis).  My TSH came back 5.4, so now on thyroid replacement hormone, more alert, but still tired, thought it was the MS, or the Sjogrens autoimmune disease, which I also have (everything overlaps). I just keep on working and going, any improvement is better than nothing.  But now I find out I'm vitamin D (and B12) deficient, even though I eat a lot of red meat and a lot dairy foods.  Vit. D level is slightly more than yours though at 13. I am not sure if there is a connection between vitamin D deficiency and MS, never actually thought about it.  But now I guess I have to research it.  I am on vacation for a few days, so will do this.  It is nice to know some else has these crazy problems too!

Marianne Murphy

 

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HEMI4MA, Community Member
7/ 2/09 4:43am

I too have MS and B12 defc (pernicious anemia) and low Vit D!!!!! I also have a lovely family thing called Birt-Hogg-Dube.Syndrome. (yes really :) I just turned 40 last month and was informed yesterday, after bloodwork, that I am now in menopause.  Life just cant get better,  huh?!  I will know more when I meet w/Dr next week. 

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SuperBunny, Community Member
7/19/09 7:24pm

That's so strange.. I have a B12 and vit D issue and MS too-- i'm 27 though and I also have PCOS.  I wonder if there is a link w/the B12/D and MS...

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BlurryeyedBlue, Community Member
8/11/09 4:31pm

 I am sorry to hear that you are suffering from so many health issues. 

  I am wondering about one thing. You mentioned that after blood work, you found out you are now in menopause.   Have your periods stopped for over a year?  That's pretty much the way a person knows when they are in menopause.

I too was informed by my Dr after some blood work that I was "post menopause" which made me laugh because I was still having a normal period every month and continued to do so for many more years after. When I questioned my DR about this, she responded that I probably wasnt really getting a period...just "monthly shedding"  and that the lab results don't lie !   Isnt it sad that so many  Drs make their diagnosis based more on lab results and less on what is actually going on with the patients body?

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latrice, Community Member
1/22/10 3:51am

I agree with your statement that most docs make a diagnosis solely on test results..Forget about what the patient's symptoms are since they say the test never lies!!, so they say. All testing methods are not 100% and I think docs should come to a conclusion based on the physical evidence(which is what your body is showing). I suffered severe muscle spasms , fatigue, joint pain, headaches and all that good stuff. Doc was quick to call it fibromyalgia and told me to enroll in stress management and exercise more..gathererd my medical records to transfer to a different doc. Found in my records that a D level was taken in 2007 showed 6.8!!!  To this day my D levels only will stay up with 50,000U a week.

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Gwen, Community Member
1/16/10 12:58am

this is so weird.  I have ms and I have just recently been told that my vit d levels were extremly low by my gyn and primary yearly exams they both called to put me on 50xxx vit d I have been having muscle spasm and tingling and heaviness in arms.  I thought I was relasping,  I hadn't got the prescription filled until I began to read up on some of the effects of being deficient.  I was also between appt with my Nuerologist.  I take b12 injects montly also I am going to see if symptoms cease before following up with my Nuerologis.  and then I just got a flyer saying my Doct is teachng on MS and Vitamin D.  she gives alot of seminars.  I will go and see what is new with this.  B12 and Vit d defiency mimics alot of Ms symptoms.. I wonder if it wasn't for the MRI do I really hav it or just defiencent dianosed in 2001

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Denise, Community Member
1/23/12 8:39pm

i am reding everyones posts and I also am vit D and b12 deficiency and i was dignosed with ms only 2 years ago and I am 52 they have been trying since 1998 to dignoise me because I ad symptoms of ms lesions on the brain but they had said my pinl tap was clear o they left it alone finally they did another spinal tap 2 years ago now they say I have ms i take a shot everyday for it was my medical dr that did bloodwork and my vitiamin d was extreamly low she said and started me on vit d it came back up after a few months she then took me off the vit d and bloodwork was just done again last month to find oout that once I was taken off the vit d my levels dropped all the way back down my ister alo has ms and he has problms with vit d and b12 levels but not as bad as mine but i have also had cancer that I had beat but they are now wtching me for breast and ling cancer becaue I have Nodules in both lungs and both breasts so is the problem the ms and like someone else posted sometimes it can be linked to some cancers so only way to really know isnto keep following up with dr appts for everyone

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Davew79, Community Member
4/13/10 12:09pm

Hi.

This may be way out of date by now, but I feel that I have to try.  Everyone knows that vitamin D is the first supplement to take for MS.  What a lot of people don't know about is the importance of vitamin B-12.  But not the type commonly found in drug stores.

Recent studies have shown that high doses of methylcobalamin, a form of B-12, can actually regenerate nerve cells. In one of the studies the scientists crushed the sciatic nerve of the test animals with pliers.  Then supplemented their diet with the human equivalent of 85 mg/day of methylcobalamin.  The nerves regenerated. 

I was falling three times a week when the nerve impulse to my knee was short circuited.  I started taking 30mg/day for two weeks, then 5 to 10mg/day.  It took a couple of months, but now it has been over four months since I've fallen.

 

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Summer, Community Member
4/28/10 8:31pm

Dear Ms. Murphy,

 

I fractured my right wrist almost three years ago.  Since this time, I have seen my Dr. twice.  Each time he has advised me that the ligs. were definately seperated on both (due to a career of Law Enforcement and an athlete).

 

Since that time, every single joint in my body hurts!  My current PA had a bone test conducted and this was negative.  My blood tests came back neg. for any abnormalities.  However, at night it is the worst pain.  My son states that I moan in my sleep.  In the morning I cannot even touch fabric with my finger's (it is that painful).

 

It seems that it was with the right wrist, and now my entire body.  Sometimes I feel as though I have beaten with a bat across my entire body;  Skin, legs, fingers, toes, elbows and now my knees.

 

 

I stay active, going up stairs, riding a bike here and there, working in the yard, etc.  I feel I am becoming 100 yrs old at 46.  Is there any advice you might have for me??

 

Hopeless in NC.........

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Kathy, Community Member
5/19/10 1:51pm

http://www.rsdhope.org/Showpage.asp?PAGE_ID=3&PGCT_ID=545

Have you heard of RSD?

In some people an injury can trigger a nerve response and produce pain in spots away from the injury . . .

 

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dpmich, Community Member
10/ 7/11 6:59pm

Actually RSD is the body's inappropiate response to pain.  Normally starts about 9 - 10 days after the initial injury.  When it should be mostly healed, the system says 'hey, wait a minute, that really hurts' .   I cut my left little finger, small cut, but had to have surgery to repair both extensor and flexor tendons.  It was after a re-check by my surgeaon and my hand was wrapped carelessly, I developed RSD.  It was 2 years of absolute Hell, resulting in the amputation of that finger.  There is alot more to the story but that's the basics.

 

An interesting side-note though.  My Dad had an occurance of RSD and he was hospitalized for 3 months for it.  That was in the 1940's.  He has a younger brother that has MS and I also have developed it.  I still think that there is a relation between rsd and ms.  

Debbie

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Christine, Community Member
9/10/10 9:50pm

Hello, I felt that I should write to you, as I had been suffering from horrible pain in my joints that had been worse at night.  I too had "normal"  blood work for over 2 years...until a friend of mine, with lupus, told me to ask for an ANA blood screen-which I did and it came back positive.  I was diagnosed with SLE.  My advice is, "If you are not feeling well-be persistent, do your research and insist that more testing be done."  Quite frequently I felt put down by doctors, who kept insisting that I should exercise more and get some counseling.  You are in charge of your own health, so make sure to take care of it.  What struck me the most was you said you felt 100 years old, I totally felt that way as well!!Good luck, and I hope you feel better soon!Smile 

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Pexas, Community Member
8/ 3/11 3:44pm

Both my granddaughter and her mom recently hurt their ankles, the mother broke hers in 2 places, they both have been diagnosed with RSD.  She drove from Dallas to Greenland (I think) S.C. and was treated by a doctor there that specializes in it but you have to get to it quick.  The granddaughter is doing great, the mother just recently had the break and is headed to S.C. next week.  Hope this helps.

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Karen Siebenlist, Community Member
6/ 8/10 8:25pm

Hi Marriane, My doctor, Dr. Ben Thrower, is the director of the MS Center at Sheperd Center here in GA and he has been doing a lot of research on the effects of Vitamin D and MS.....if you can, try to pull up some articles on it.....within the last year they started checking my level and the first time it was checked it came back as 9.7 which apparently is way below normal....so he put me on a very high prescription dose of Vitamin D....he said the over the counter vitamin D is too synthetic or something like that .....I am on 100,000 units once per week.....the pharmacist even questioned the dosage but when I told him my level he totally understood....it has since come up a bit , but he still has me on the same dosage.....apparently the best way to get vitamin d is from the sun....but I cannot stay out in the sun long at all....

so , do some research and you will see that there are plenty of studies going on about vitamin D and MS......and my doctor is doing extensive studies on this....

 

Karen

Atlanta, GA

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rosie, Community Member
3/15/12 5:51pm

what level should a person with MS be at?  should it be higher than the average person w/o auto immune issues?  mine started at 12 and is now up to almost 30 after being on 50,000 iu for 2  years...slowly but surely it is going up.  i have not had a relapse since starting and my fatigue has improved significantly.  but i am not sure what level i should be striving tp be at....can u help??

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BlurryeyedBlue, Community Member
8/11/09 1:55pm

 Oh my gosh. I was googgling Hugh Downs and came across your page and  I am so glad I did!  I have not been diagnosed with MS HOWEVER, I have been struggling for years with all of the symptoms you have described and then some. I have seen countless Drs and not one has been able to help me .   My visual problems are the most depressing and scary at times.  But  I  will get to the subject of VIT. D deficiency... my last vit. D  result was 5. I take 50,000 IU's once a week for 4 weeks then get rechecked.   It does go up to normal but falls back down to well below normal within a few weeks.  I never  really notice too much difference in how I feel when my levels are normal.

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BlurryeyedBlue, Community Member
8/11/09 4:05pm

I  recently posted a response to this but after reading it, I felt it was not very helpful so I am  going to try again.  First I want to make it clear that  I feel awful most of the time.  When I do take my RX of 50,000 IU's of VIT D  once a week for 4 weeks , I do not notice feeling any less awful. However, when I go to Hawaii  and spend  a week on a beautiful beach getting lots of Vit. D  the natural way, from Mr. Sunshine , not surprisingly,  I do feel much better Wink  My conclusion is that getting it from the sun is a better method for me ...as long as Hawaii is thrown in there too Cool

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Lisa Emrich, Health Guide
8/11/09 5:27pm

Hi Blue,

 

I'm sorry that you are having such a hard time.  When my Vitamin D levels began to rise, I definitely did begin to feel better.  First thing I noticed was less achiness in my bones.

 

Like you I take 50,000UL weekly.  However, at first we started with 50,000UL three times each week for a month, switching to weekly afterwards.  I also began to take 2000UL of over the counter Vitamin D2 daily.  Now my levels are barely within the normal range, but we're keeping with the program to try to increase it.

 

For me, it has taken many months to get my levels to rise.  I hope that supplementation begins to work for you.

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Harmony, Community Member
5/ 5/11 1:40pm

Hi Lisa,

 

I am just now reading this.  I, too, have MS.  Yesterday I was told that my Vitamin D Level came back at 15.  My GP prescribed 50,000 IU of Vitamin D which I will begin tonight, hopefully.

 

I wanted to ask you who has been working with you on the Vitamin D levels?  Was it a GP or your neurologist.  If it wasn't your neurologist, did he/she have any light to shed on the subject?

 

You said that you began to feel better once your levels began to rise.  Does that mean it took months before you began to feel any improvement in symptoms?

 

I am so hopefuly that finally there may be something I can do to improve my symptoms without medicines with multiple side effects.  I almost rejoiced at the result of the Vitamin D test after over a decade of complaining of fatigue, mucle pain, IBS, and others and being basically told, "You have MS and there is no cure.."  Perhaps there is hope that I may see improvement?

 

Thank you so much for your column and the work you do!

 

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Harmony, Community Member
5/ 5/11 1:55pm

P.S.

What are TSH levels?  I'm afraid I'm not familiar.  Thank you.

 

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Lisa Emrich, Health Guide
5/ 5/11 3:58pm

Hi Harmony,

 

I definitely began to feel better as my vitamin D levels began to rise.  I didn't take long to start getting my levels up since my dr had me take the 50,000 pill 3x/week for one month, then I took 1x/week for a month, followed by 1 every other week.  After a few months my levels were still barely within the "normal" range.  So I add over-the-counter vitamin D tablets. 

 

It took about a year to get my levels to where my neurologist and rheumatologist wanted them.  We kept adding different doses of OTC vitamin D supplements.  I currently take 10,000 iu vitamin D(3) capsules daily which I get from an online store.  This is just what "I" need to keep my D levels around 55-60. 

 

Originally, it was my primary doctor who tested my blood levels.  But it is my neurologist and rheumatologist who are on top of checking my levels now and want them to be somewhere between 50-80.

 

TSH = thyroid stimulating hormone

Testing TSH is one method to get a rough estimate of how well your thyroid is functioning.

 

I hope that you begin to notice a difference quickly.  If you are like me, you might need to combine the prescription D with the OTC vitamin D supplements.  If you've got any questions, please don't hesitate to ask.

 

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just2tired, Community Member
8/28/09 11:31pm

Hello Lisa! Got your message and I will be answeriing that separately.  As a matter of fact, a few months ago I read an article on the connection between Vitamin D and MS.  So I started taking 1000 IU twice a day (I always start supplements at low doses).  Girlfriend, I felt the effects the very next day.  Although it does not help the intense pain I am in all the time, my energy and endurance levels shot up dramatically!  I could not believe it.  I will be increasing to 3000 IU a day on 9/1/09.  I just had my comp blood panel done, and my dr was very impressed with my vitamin D.  Although the results showed  23 for Vitamin D, this was compared with the blood panels from last August when it was at 7.  In fact my whole panel showed excellent blood health if you know what I mean.  I highly recommend increasing your Vitamin D, but start low in case you may have a reaction or something and build slowly.  My family noticed the change immediately, and the D was started all on its own, with no other changes in my meds.

 

I would definitely give it a try!

 

Love and Light,

Jan

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lori s, Community Member
9/ 2/09 3:54pm

I have M.S. I started feeling crappy again. Tired all the time sleeping 12 -14 hrs, muscles hurting, twitching (which I assumed was all the m.s. til I read more about vit d). "Brain fog" increased, constipated, upset stomach, increased migraines.

 My neuro's office called today. Vitamin d level DOWN AGAIN. Should have known.

Earlier this yr went to family dr. told him how I felt. Had read an article sounded like me, I asked them to do a vit d level. Came back 18, was told take vit d over the counter. Right> Got worse down to 9, then finally was given 50,000 units 1 x weekly, no side affects, took almost 2 1/2 mths to come back to 66. They never gave refill or said keep taking, soooo I didn't.

 Well when the crap hit again, I asked Neuro about d level, they did the test, which they told me today 20.3.Back on 50,000 units, am going to question big time why the drop. Especially after reading bout problems low vit d causes.SCAREY

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Kat H, Community Member
9/10/09 7:42pm

I am so happy to have found this site. I have been numb since May of this year which led to my Neurologist ordering a lab and then a MRI. The bloodwork came back normal and the MRI showed a small lesion on my spine. She said that if she were to continue seeing me (we were moving in 2 weeks) she would be positive to say I had MS and that the lesion was definitely causing the numbness that I had been experiencing. I had the same symptoms 8 years prior but my MRI only of my brain at that time, was clean and my bloodwork was good so the doctor's conclusion then was that it was anxiety. Within a few months that episode was over and hadn't came back until this May. Well, since the end of July, I began to experience muscle spasms in my thighs and excruciating leg pain that would hurt so bad I couldn't keep my legs still. Come the beginning of Aug. I began have extreme bone/joint pain and a headache(s) that NEVER go away. I have been in constant pain, taking Hydrocodone, Darvocet, Tylenol w/Codene, and Naproxen with NO relief. I FINALLY get into a Neurologist here in MD next Thursday!! I did have an appointment last week w/a new doctor where we live now who ordered blood work and gave me a referral to the Neurologist at Bethesda Naval Hospital. Well, they called with the lab results and the blood work looked good, all but the Vitamin D. She said that it was low and that I need to take 50,000 units 1x/day or week for 8 weeks followed with 400 units 2x/ day for 3 more months. I

am extremely anxious going to the Neurologist but I just want this pain to end. I'm married, we're military, I have 3 kids and I'm taking care of my father who has dementia. I don't exactly have time to be "sick". If anyone can relate or offer advice I would love to talk to you! Thank you for all of your posts!

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momof4boyz1girl, Community Member
10/30/09 1:54pm

Hi, I was searching this web-site for answers regarding my low vit-d levels and just read your situation. I have no answers or insight for you, I am sorry. But, and I have never done this before, felt compelled to let you know that I will pray for your health and your situation. I pray that everything turns out OK and that God will heal you completely! You sound like you have quite the load that you are carrying! I really pray that things become 'easy' for you and your family...you'll be in my prayers! God Bless...Shanna (mom of 5 w/low Vit-D levels?)

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oldcoachsh, Community Member
5/ 8/10 8:38pm

I could not keep from commenting when I saw that you had a small lesion on your spine but not on the brain. Please educated yourself about NMO(Devic's Disease). This condition was once thought to be a form of MS; however, new research suggests that it is a separate disease. My sister has NMO, and all that you have described matches her symptoms. Good luck and ask your neurologist about NMO.

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Irene, Community Member
2/ 3/11 9:30pm

Hi Kat,

         I was born with Hip dsyplsia and it took doctors 5 years before thsy found what was casing my hip pain,had hip resurfacing surgery on both hips and some knee surgeries, and back to work i wnet still with alot of joint pain, brain fog,numbness and tingling in my hands. Had EMG test done the found bilateral neurophathy and radulopathy and no knee reflexes. My Orthopedic doctor, referred me to ruhmatolgist ,said possible pinch nerve. mri shows degeneration of c5-c7, i have headaches,restless leg at night. I was taking neorantin dor restless leg didn't work so I talke 10 mg of Diazapan, it helps and 800mg of motrin 2-3 times of day for inflammtion which like you don't help. I've had cordisone injections and help a little. I told my doctor everytime I take steriods of any kind they give me some relief. he put me on predisone for7 days becasue on one of my blood test my ANA came out positive for lupus. It was the I ever felt, no joint pain and energy, but after seeing the rhmatologist my DNA strand was negative for lupus. Back to the drawing board. I ask my doctor if i could continue on predisone and he said no too many dangereous side effects. I been reserching onthe internet and asked him that maybe my adrenal gland might not be makig enough cortisol to fight off inflammation or vitamin level is down. Sure enough my Vitamin level was low,I told doctor i have been taking a 1000 units for 2 years now, so he put me on 50,000 units for 6 weeks and I now have knee reflexs which I didn't have before and my depression has improves some. I went to see a Neurolgist 3 days ago gave him my pain diary which I keep and what I have been suffering for years and what each doctor has told it could be. The Neurologist is going to start from scratch. I understand your pain and i hope you get answer from your Neurolgist . I will be curious to hear what your neuroglist has to say.  My mother past away about 2 years ago and she had joint problems and demntia, I saw a show on mystery diagnose where a women had some similar problems,she was diagnosed with Pernicious Anemia, but since her iron levels were ok they never thought of low vitamin D or any other vitaimin deficinceys like B12 which can cause joint pain,or demention if not taken care of. Take care and you get better soon.

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suze, Community Member
3/12/11 9:14pm

I have, like many others so I see, have been trying to figure out what is wrong with me for about 5 years.  I began with digestive symtoms, numbness and tingling and increasingly worse depression and had all the (GI) tests they knew of to do EGD, colonoscopy, barium swallow, & vials of blood work.  I had also mentioned the numbness and tingling to my internist and gastroenterologist.  It was always blown off as a seperate issue-lets figure out what this stomache problem is first-or one thing at a time dear. 

 

As an ICU nurse for many years I frequently saw patients with multiple problems where their docs would only look at their "Part" and not the whole picture and group of symptoms.  This is how I felt.  The gastro. told me I had IBS.  So my internest had me see a new GI doc.  She redid the EGD and found only inflammation-no recommendation, nothing.  That was almost 3 years ago.  My health got markedly worse after I moved.  I had all the same symtoms but worse.  The numbness and tingling moved to my feet and arms instead of only my hands.  I was very depressed and extremely tired and foggy.  Not so good with 4 kids and a busy huband and no family around now for support.  

 

Just last month, after seeing a new OBGYN for a yearly physical I was surprised when she wanted to check my Vit. D and especially surprised to see it was very low. ( I had put myself on 1000 IU's/day a year ago after watching Dr.Oz.)

 

  My new OB prescribed 50,000 IU's/wk X 8 wks and I feel better-still not great, but less tired and foggy and thank heaven, less depressed.  (she had also prscribed Celexa that I took for 3 wks and quit because it made me so tired)   I continue to have the numbness and tingling but am hopeful that I can get that under control with a higher Vit. D level. 

 

I'm grateful for this chance to tell my story and to have read others so similar to mine. 

Best Regards to everyone!  You are always your own best advocate.

 

Suze

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catpez, Community Member
7/16/11 10:24pm

Hi Suze,

Thanks so much for your post!  I could have written it myself.  I have had gastric issues, heartburn, etc. accompanied by numbness and tingling in my hands, feet (now moving to arms and face...ugh!), fatigue and some muscle cramping/twitching/pain.  My gastroenterologist told me that they weren't related, and focused on the endoscopy results....typical GERD, espophagus, gastric sensitivity issues.  I thought I had celiac disease, since I have bad tingling a day after after bowel upset, but that biopsy test was negative.  I have tested low for Vitamin D, but not too low (32).  Now I'm concerned that maybe I have MS, since the Vitamin D supplement my doctor told me to take isn't helping...she said take Citrical w/D, which is only 1,000 iu.  I feel like it's not even being absorbed with all my digestive issues!  She's checking my levels again and sending me to a neurologist.  I just want a firm diagnosis and acknowledgment that the GI issues and the tingling issues are totally related.  Thanks so much for your post...it totally justifies what I've been experiencing all along!

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skeetelmore65, Community Member
8/12/11 1:41am

WOW..Hello everyone,I never imagined that I would find such a place that answered more questions for me that the doctors have.Tongue out  I have been suffering with this debilitating pain going on 6yrs. and I am so tired and I know my husband is 2. He has just taken over the house and made sure that I and our son was taken care of, the best he could. I thank God 4 him and his love.:) 

I have all of the basics of symptoms here( if you can call it basic..NOT) I do have most, if not all of the symptoms that have been mentioned and so I am not going to mention them all (I am sure, I will forget something anyway..yes, another ugly symptom.:) I do have numbness(mine is on my face and head,but it started on my left side mostly) and I find that it is like someone drew a line down the middle of my body and it takes over completely of my left side to where I can't even move my left arm and leg at all(like it is paralysed, is that MS?) I do have a low vitamin D level(19) and they have me on 50,000 IU 2x a week for 8 weeks then be re-checked for my levels. I hate to say it, but I feel better from the numbness, but the pain is agonizing..argh!!!

I have experienced these symptoms that is felt all over my body: burning skin, weakness,pins/needles,soreness(feels like I have been beat by a bat all over, even my head feels bruised all over),for a long time with feelings of being stabbed or like someone has left an axe in the middle of my back( my old NL found a place in the middle of my back,but he didn't know what it was and said it was out of his area of expertise) Could it be a lesion?..MS or Devics disease? I am curious because I really haven't recieved a correct dx, I don't think as of yet. They have dx'd me with DDD or Cervical,lumbar & Hip/Joint,Spondylosis,AVM( in which, they don't think is the problem, but I hurt there a lot),Myofascial Pain Syndrome and Fibro(of course) and there are more, but unfortunately there is something they are leaving out,as bad as I hate it to say that. I don't feel that I have ALL of this, although not sure(I could, I guess), but I do know that I am utterly miserable and am not a doctor, but something is bad wrong. This pain is relentless and excruciating...very debilitating like everyone else here is.

I am plagued with an array of symptoms with blurry vision that is the newest and sometimes the scariest and I have eye pain that feels like pressure behind my eyes,pains in my head(with confusion,irritability,can think or a brain fog).

I do have something going on that I don't know if it is connected or not, but feel it is, since it seems to get worse after I get out in the sun.(Lupus?) I'm having these bumps that I have noticed appearing and wonder if I do have some kind of Autoimmune disease because these little papules or pestules(pimple-like formations) mostly on my thighs,upper arms and some show up on my face,mostly on the sides of my nose,chin and between my eyebrows.They aren't bad now, but they once were really prominent and are slowly trying to come back,it seems.This makes me think something is wrong that is causing it.(I am 45, not a teenager:) I have noticed knots on my head that are different than the other places. They are strange and feel more like a blood clot, they are not the boils, they are different,more under the scalp, but they are just on my head.

I know, I may not have covered everything, but you get it that I am scared here and IT is a lot, I know. It is just down right hard and now that the past two years, I have become more reliable on my bed (a lot of my time anyway), because I can't stand for long periods,if I do my back will burn like FIRE (there is a place...a lesion? that is unrecognized in my Thoracic).

Something is wrong and it isn't just some simple fix. I have read most of you have MS,but is there anyone with these symptoms that is dealing with parkinson's disease? The reason,I am bringing that up is because my left arm has a shake to it that I noticed seems to be more of an issue if I use it more than when I don't, but it shakes either way sometimes..I donno.Undecided

I am taking some strong medicines for my pain and I don't like doing that. I don't even like to take a motrin for a headache, but my pain level can out of the roof sometimes and it is unbelievable torment that lives with you in one way or another because you never know what to expect from one day to another. I know most of you here are experiencing it, I can tell and I will keep you in my prayers. God Bless you all...always. Smile <3 Karen

PS.Sorry this was so long, forgive me.

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cyndi c., Community Member
2/ 5/12 8:12pm

karen, I just had to respond to your post just because the way you explained your symptoms are identical to my description, and I too am 45. I have had this issue for about 13 yeara now and sooooooooo understand your frustration :( please contact me at my email addy a. I would like to pick your brain and see if we can come up with something. my email is cyndicole@gmail.com .I am baxk to the neurologist tomorrow for test results! Thanks and good luck with your search for answer :)

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Bocephus, Community Member
6/17/12 11:31pm

It sounds like you may have MS to me.  I am not a Dr., but I have had all of your symptoms, and I am currently undergoing tests for MS, like 2 MRIs, lumbar puncture, I have 2 lesions on the left parietal brain lobe and in corpus callosum.  My pCP, not my bonehead of  Neurologist just put me on Vitamin D3 50,000 units per week.  I hopefully will have a diagnosis within 2 days, and once I get it, I am dumping my Neurologist.

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mperkins, Community Member
6/18/13 12:37pm

Karen,

 

Have you seen an Endocronologist? Thyroid levels checked? I too suffer from Fibro. As well as Hypothryroidism..and just diagnosed with vitamin D deficiency.

 

Good Luck!!

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m, Community Member
9/10/13 11:43pm

I realize this post is old and hope you all are feeling better. i have also had similar issues lately and dont think its ms but perhaps vitamin deficiencies as others have posted. i know this is an ms board but do you think the vitamins could be my problem? i was once found low in vit d...and took some for a time but never went back for followup. now i wonder if thats the issue again.?? anyone have any advice?

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catpez, Community Member
8/13/11 9:53am

FYI, I went to the neurologist and the brain MRI came back normal, so I don't have MS.  What I do have is an over-active nervous system, as well as hyperventilation syndrome.  Apparently, I've been subconsciously hyperventilating when responding to stress (I received some bad/anxious news from my mother regarding her health prior to all of this happening).  The hyperventilation had changed the PH of my blood and caused all of the tingling and numbness.   

 

I still don't know whether the GERD is related to all of this, but I'm still trying to deal with the symptoms.  They've definitely improved since I received the diagnosis.  Sometimes not knowing is the worst part of having weird symptoms!  Especially since anxiety was causing half of this in the first place.  Best of luck to you all.

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Momster, Community Member
7/19/12 12:20am
Nerve and muscle needs magnesium, calcium and D to function.  These are the workers of muscle and nerve. No minerals equates to poor nerve and muscle function. It is like hiring a staff of five to tend a party of 5000.  Not enough!! You should get your Vit D checked because it is a rampant deficiency we cope with because we are all indoors all the time.
 
I just discovered that I have a vitamin D deficiency and am so empowered to know that diet and sunshine alone can cure my muscle aches, weakness, depression, irritability and memory problems!! You too, can feel better if you incorporate vitamin D rich foods and at least 20 minutes in the sun daily. You have to do it though, taking a vitamin supplement will not be enough.  I learned the deficiency can lead to immunosuppressive conditions and auto immune disease which may be why you are dealing with a diagnosis of autoimmune disorders!!  Another issue relating to your digestion that can relat to Vit D deficiency, could be gluten intolerance, otherwise known as celiac disease; or Crohn's disease, which is related to Vitamin D deficiency.  If you tested negative for celiac, just try a gluten free diet and see if it helps, lab testing is not error proof. It is all interconnected.  Have you tried a gluten free diet?  I know how hard it is to change a diet. I am like a robot when it comes to food. I eat the same things over and over and complain about how bad I feel, but I have had it with the memory fog, and depression and am dedicated, and I mean life changing dedicated to changing my diet. Why do I allow myself to suffer??? I thought I had some horrible disease and all was hopeless, but it is just my diet, yeah! I am thrilled to know the reason the doctors cannot find something wrong is because I am healthy, but deficificient in Vit D. Research Vitamin D, and gluten free diet and do it, stick to it and get out in the sun, I hope you feel better. We all should be healthy and happy!!  Oh, oddly I live in the valley of the sun, Phoenix, and feel my worst in the summer, go figure? Be sure to incorporate dairy with each meal so that you can aborb Vit D.  Very important, and so much cheaper than searching endlessly for an illness or dealing with the long term effects of deficiency.  I pray you try this and it helps, give it some time. The most important thing is to get into the sun.
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Staylor, Community Member
11/27/11 12:30am
I have had similar symptoms for over 7 yrs. Such as fatigue, brain fog, lack of sensation on the left side of my face, numb thumbness, constipation, pins and needles in my hands and feet, pain in my legs, clumsiness, hot sensation in my inner thighs and left heel, and being constantly tongue tied. Several MRI's and many Dr's later, not a clue to the cause. To make a long story short, 6 mos ago I started to have major heart palpitations. A blood test revealed I was B12 dfficient. 2 weeks after I started the B12 injections almost all of the symptoms went away literally over night. I never thought I would feel normal again. Have you been tested for B12 deficiencies? It's said the symptoms can mimic MS and Parkinson's! I have 5 young children so I know where you are coming from and I'm only 33 yrs old. Hang in there!! Reply
Chris, Community Member
11/15/09 2:31pm

Well, I went numb on one side had and my first migraine aura and thought I was having a stroke.  I went through all of the MS testing, saw a neurologist and rhumetologist, had tons of blood tests and THERE IS NOTHING WRONG WITH ME - YEAH RIGHT!  I continued to be numb, have vertigo, muscle spasms, got upset over things that don't normally upset me at all, tingling in arms, legs, face, feet, etc.

 

I have suffered from horrendous back pain/stiff muscles and headaches that would last a week for more than 10 years (I'm 39), and this episode was really debilitating to me.  I had to work, because docs all kept saying you are just depressed and having anxiety - I am pretty happy actually.  I took ativan (which actually helped, but not with the stiff muscles), flexerill, darvoset, even all at the same time - didn't help. I would wake up in the morning as stiff as board....tingling and feeling like the floor was moving when I was standing still.....

 

Well, I read on-line that vitamin D deficiency could be a cause of symptoms and had to request they test me for that..  I had to wait three months for an appointment and just started taking some anyway...  I was taking a 200 IU dose for month before I had my blood test.  It came back low normal, and I told them I was taking a supplement, and they offhandedly said to use the Viactiv chews.  Well, I started taking those, and within one week - my tight back muscles were totally LOOSE!  My numbness is finally subsiding, and I feel GREAT!! No fatigue for no reason, muscles feel good, tingling almost down to nothing, no headaches, no crying over nothing, no stiffness in the morning...

 

I still don't know what happened to me - it was awful.  I have one kidney that has produced a kidney stone, I do have stomach problems pretty often, and I eat way too much sugar - but for now - taking 125% of vitamin d, 50% calcium, and 50% potassium every day has greatly improved my well being.  It doesn't hurt to take the viactiv so if you are feeling bad, just give it a try.  If you feel better, it must mean you were low.... Just make sure you share that info with your doctor...  But I have seen so many people with the same situation on line - doctors telling them that there is nothing wrong with them when they have all the symptoms that I did and they are suffering horribly, potentially needlessly - if they are simply low in vitamin D.  Given the drugs they tried to give me - it makes me wonder - how many of us that have been prescribed antidepressants just need vitamins?  Why are so many of us low?  Are we inside too much?  This has just been such a huge epiphany for me - I just want to tell everyone so people don't have to suffer...

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Jan, Community Member
12/ 3/09 11:45pm

Hi All, I've been having alot of the same symptoms as what has been described with all of you with MS and the vit D deficiency also.  I've been diagnosed with the vit D deficiency for almost a year now.  Thought I was losing my mind with the muscle aches, fatigue, and brain fog.  I'm a student working on my masters degree 45 years old.  It almost totally debilited me.  I'm glad we finally found it, but now the doc tells me I have lesions on my brain on a recent MRI.  I have confusion, dizziness, staggering when walk, sometimes vomiting from nausea caused by dizziness, some tingling in arms or hands, very bad headaches, an blurry vision.  This all has come and gone for years and just stays longer now.  Apparently, it may be MS, but have been referred to a neurologist for more testing.  I will tell you all that I was the healthiest when I sought the help of an OMD (practicioner of Chinese medicine)  The acupuncture, herbs, diet change, and weight lose helped me so much I did not have any of the symptoms.  I'm going to go back to the Chinese medicine again and restrict my diet, try to take of lbs, begin the acupuncture again, and start taking herbs to build my immune system up again.  I'm also going to do some research of MS and vit D deficiency and Chinese medicine.  I owe it to my fiance to be the healthiest and independent person I can be.  For now I'm going to put grad school on the back burner until my health improves.

 

Jan

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Sleepygirl, Community Member
12/10/09 9:52am

Jan, I can't tell you how nice it was to read your posts.  I was close to tears reading them because you described everything I've been going through for years.  I'm so worried.  I was recently diagnosed with Vitamin D deficiency...I was at 9 on whatever the scale is.  Doctor prescribed 50,000 PER DAY for 3 months...then a re-check.  I'm concerned I'm taking too much.  I felt like a new woman at first, but when my menstrual cycle started I feel like everything flared up again.  All of the symptoms you've described, I have exactly.  I'm concerned about the eye blurriness.  But, I also had issues with facial skin becoming very transparent and sloughing off leaving bright red skin beneath.  That is all gone now thank God.  This started as a teen when I couldn't stay awake and had muscle weakness.  #1 diagnosis: Iron deficient anemia.  Then after I had my first child, #2 diagnosis/cause: Depression/Allergies/Heavy Menses.  At the age of 30, #3: Migraines/Fibromyalgia.  At the age of 33, they found Melanoma.  It was successfully treated, and I began my new life OUT OF THE SUN.  At age 34, my body slowly began to "fall apart".  Diagnosis #4: Narcolepsy, Cystic Ovaries. With an rx of Provigil, then Nuvigil, 200mg twice daily to keep me from being horizontal most of my day.  In October, #5: possible Myasthenia Gravis.  Finally, #6: Vitamin D Deficiency.  I'm so frustrated, and I feel awful at age 36. Any link to MS?

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jilly1965, Community Member
1/28/10 4:30pm

I had been having a reaction to copaxone and went off of the injections about 6 months ago.  Feeling like I need to help myself somehow, I started taking 8,ooo IU's of vitamin D in an emulsion that I got from my chiropractor.  She also suggested I get off of gluten, refined sugar and dairy.  Within 1 month my persistant symptoms are gone.  My head is clearer, my energy levels and way up ( I don't feel like I need a nap after work) and the most shocking change is that I no longer have that radiating pain when I put my neck down. 

I am faithful to staying away from the gluten (save a cookie on Christmas), but I have had dairy and sugar in sparse intervals.  I believe the biggest change has come from the vitamin D.  I missed it for a couple of days--wondering why I was doing it--and started to feel worse.  After I made the connection, I never want to be without it.  I still haven't had my levels tested, but am planning on having it done within the month. 

 

It seems crazy that no matter how often I have asked my neurologist about vitamin and diet therapy, he says it does not make a difference.  It is maddening and promotes distrust. 

I hope the absence of symptoms continues for me and I wish you well.....

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Lisa Emrich, Health Guide
1/28/10 4:43pm

Hi Jilly,

 

What a wonderful success story!!  Taking vitamin D is now just part of my daily routine, I don't even think about it anymore.  But I have been comtemplating the attempt to cut gluten out of my diet, just to see.  I don't drink dairy but do love hard cheeses.  Hearing of the benefits you've seen helps me to make changes for myself.

 

Sorry that your neurologist doesn't support increased vitamin D intake and a dietary approach to health.  I don't know that I completely believe that diet alone will slow down MS progression, but I do firmly believe that what we eat can affect our health.  If I eat bakery goods, my rheumatoid arthritis flares, simple as that.

 

I hope that the absence of symptoms continues for you too.  And thank you for you well wishes.  Smile  Now get that vitamin D level checked so that you know where you stand right now so that you can make adjustments to your intake needs.  hehe

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jilly1965, Community Member
1/31/10 8:00am

Hi!  As luck would have it, today I read your reply and ate breading on my chicken last night for dinner.  So much for the elimination of gluten.  It did taste oh-so-good though.  Today I am back on the wagon.  By any chance, have you read The MS Recovery Diet by Ann Sawyer and Judith Bachrach?  If not, I do recommend it.  I want so badly to be one of those success stories.  I want to be one of those people where MS is a mere footnote in their life.  I also want to be rich and travel the world, but what are the chances?Laughing But the way I figure, I am more in control of my health than I ever realized and I want to be strong enough to make it happen.  Anyhow, it is tough to find allies in all of this.  People tend to think you are a bit of a freak when you try things unconventional.  And because I have tried other things before--like daily wheat grass--I tend to get a bit of the eye rolling reaction from family (and my significant other).  "Why can't you just stay on your medicine?" They also think my chiropractor is a bit of a witch doctor because she practices kinesiology(sp?).  Add into the mix that I also get acupuncture--and last week my session consisted of getting mugwart burned in my salt-filled belly button.  Well--you can get the picture.  I am lumped into the freak pile, and in a small town--that lumps you with the guy who plays guitar barefoot every Sunday morning for hours--screaming "HYPOCRITE" to all passerbys.  Hmmm...how is that for grouping???

All right, enough of the self-pity--laundry and coffee are waiting.  Take care and have a good day and thanks for the reply. 

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Kacer, Community Member
6/30/10 6:09pm

Yeah, milk products are an issue w/ MS. They have a substance called Butyrophilin (I think I spelled that correctly) that has been proven to cause ppl w/ MS to have an exaccerbation. The Gluten may also be a factor, I was off that for the 1st year in my journey to "health" now I have to REALLY REALLY want the food to do gluten, and do a 1 month total fast FROM gluten every year besides. So I agree w/ your chiro. I STRONGLY suggest you also look into Omega 3 fatty acids... I like flax (seed) oil. You may do better w/fish or a combo of the 2.... just watch make sure it's from a company who protects the oil from heat, light and oxygen (the brancd I take says on the label) and consumer labs always rates them well along w/ a few others... but I seem to do best on their flax.  (Nature's Bounty/Puritan's Pride Brands if saying that here is allowed... if not, just remove)

 

 

 

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jilly1965, Community Member
1/28/10 4:30pm

I had been having a reaction to copaxone and went off of the injections about 6 months ago.  Feeling like I need to help myself somehow, I started taking 8,ooo IU's of vitamin D in an emulsion that I got from my chiropractor.  She also suggested I get off of gluten, refined sugar and dairy.  Within 1 month my persistant symptoms are gone.  My head is clearer, my energy levels and way up ( I don't feel like I need a nap after work) and the most shocking change is that I no longer have that radiating pain when I put my neck down. 

I am faithful to staying away from the gluten (save a cookie on Christmas), but I have had dairy and sugar in sparse intervals.  I believe the biggest change has come from the vitamin D.  I missed it for a couple of days--wondering why I was doing it--and started to feel worse.  After I made the connection, I never want to be without it.  I still haven't had my levels tested, but am planning on having it done within the month. 

 

It seems crazy that no matter how often I have asked my neurologist about vitamin and diet therapy, he says it does not make a difference.  It is maddening and promotes distrust. 

I hope the absence of symptoms continues for me and I wish you well.....

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Jan Nash, Community Member
4/23/10 11:36am

Wow, earlier this week my internist finally decided to check my vitamin D level and my TSH also.  I've had MS since 2004.  Lately, I've had terrible pain, extreme fatigue, same symptoms you have!  My vitamin D level was 19 and my TSH was 6.4.  I'm going today to pick up my medication (vitamin D 50,000 mg once per week for six months) and my thyroid med.  I'm interested to hear how you do on vitamin D treatment.  I sure hope this will help my pain.  It's hard to sleep at night when everything hurts!  Hope you get feeling better soon!  Jan Nash

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Lisa Emrich, Health Guide
4/23/10 12:35pm

Hi Jan,

 

I have to really think about how I felt when my internist first checked my vitamin D levels.  I'm glad that I wrote it down here so that I can remember.

 

I felt really bad!!

 

It didn't take too long before some of the achy bone pain began to subside.  My body was simply craving vitamin D and needed the boost.  One thing I didn't do right from the beginning was start to supplement with over-the-counter vitamin D at the same time as the prescription.  I wish I had, but my internist didn't think that it would be necessary.  She said that we would transition to OTC after my levels got up.

 

Finally, my vitamin D levels traveled into the "normal" range which took almost a year.  When I would start to lessen the frequency of the prescription D, I could start to feel it (negatively) in my bones and muscles.

 

Just recently I retested and now my neurologist and rheumatologist want my serum levels to be higher still.  In fact I wrote about it last week in Vitamin D and Multiple Sclerosis: Where do I stand? 

 

I'm back to taking weekly 50,000IU of prescription vitamin D in addition to daily 5,000IU of otc vitamin D supplements.  Sounds like a lot, but apparently my body needs the extra.

 

I hope you begin to feel better really quickly.  I understand the type of pain you are experiencing right now.  Not fun at all!!

 

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Jan Nash, Community Member
4/23/10 1:21pm

Hi!  Thanks for your info!  I just started taking the OTC vitamin D and I'll start the prescription vitamin D today.  You have no idea how long I've been in awful pain!  It hurts to sit, lay, and after I've walked a little.  I'm 55 years old and used to feel great!  I used to live in Las Vegas and the heat was the only thing that bothered my MS.  Because of that, I moved to Duluth and I love the climate and was doing great until this pain started.  I'm so glad to finally find out what it is.  I hope you continue to post how you're doing, I will too.  Take care!  Jan

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Ang_E, Community Member
5/16/10 12:32pm

I have been reading on multiple sclerosis for the past couple of years now but haven't been diagnosed. I sort of suspect I might have it, I mean, what else could answer my symptoms....I guess I'm just on this sight, looking for information and just venting...I appear to be healthy to everyone else, but only I know the turmoil that is going on inside of me...At this point, as bad as it sounds, a diagnosis of MS would be a relief, not because I want to be sick, but because it would bring some closure to alot of this that's been going on for years...it's not just me feeling like a hypochondriac or feeling lousy all of the time. I will know what is wrong (if something is wrong) and can deal with it...anyways, i'm just rambling...i'll post another with my symptoms....thanks for hearing me whoever you are - where-ever you are!

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Lisa Emrich, Health Guide
5/16/10 12:38pm

Hi Ang_E,

 

Welcome to MS Central. It is very common to actually feel relief after receiving a diagnosis of MS after years of bizarre and unexplained symptoms.  I'm glad that you found our little community.  Consider writing a Sharepost to share your story.  That way others can respond back to you more easily.

 

Hope you're doing well this Sunday.

Lisa

 

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BB, Community Member
6/10/10 11:39pm

I'm in the same boat...or at least in the same lake.  I have found that the worse part of this is that I feel like i'm going crazy.  the doctors can't figure out whats wrong with me or you or most of the people on this chat.  the nuer took mri on my brain, while was there he could have just taken my neck and spine, but nope. now i get to wait three months for the results and I'm suffering.  god bless you and I pray that you find some answer soon.

 

BB

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marie, Community Member
9/14/10 8:15pm

Hello,

 

I was searching on internet to find out what is happening to me and finally came across your web site.

 

I have many similar symptoms you and other people. My story starts 2 months ago, in July 2010. It started with kind of dizziness ( I describe it as "kind of " because it was completley something different), strange headaches, speaking and concantration difficulties(brain fog), extrem tiredness and need to sleep (slept 13 hours without any waking), pain in the back of my eyes, kind of pain on my throat, muscle weakness, teeth grinding(or tight jaw) and burning and dry eyes. I went to doctor and I had my blood tested. Doctor said that I am a vitamin D deficient. I've started using pills combination of Calcium and Vitamin D3 (as vitamin D deficiency causes osteoporosis). I am taking 2 tablets every day and each contains 400IU Vitamin D3. I felt much better and there were no any symptoms until last week, when my pills were running out, I decided to take once a day until I got my prescription. I can say that I used 1 pill a day for 5 days and symptoms are back. It's been 5 days I've been taking the regular dose again but symptoms are not dissapearing. If they will dissapear for a long time I want to try not to use them for few days to see If the cause of my symptoms are because of Vitamin D deficiency.

 

On my pills bottle it is written that side effect of excessive calcium level in your blood can cause weak muscles and dizzness as well. So, I am not sure if my calcium level got higher because of those pills.

 

My symptoms are very similar to MS symptoms and I feel like I am likely to have it (relapsing remitting MS). My vitamin deficiency is caused by lack of sun light because I used to live in Turkey and now living in London. I have been here for 3.5 years and even during the summer there is a short period when you can absorb proper sunlight. I was a very healty and active person and I am relatively young 31 years old. I remember how hard I worked and got tired and came home did excercise, cooked, washed the dishes etc. ayear ago but now with these symptoms it is eveb very hard to move my arm or speak. Brain fog and speaking difficulty are worse than tiredness. I have been studying for a year, doing MSc and these symptoms appread during my research project, fortunately I managed to do it. There is just one thing left is my presentation. I hope my symtpoms will dissapear in two days and I can give my presentation.

 

At the beginning I tought the symptoms were because of the high stress level of my life, school, job, wife, family everything, loads of pressure but it appeared that it could be because of MS or anything else. I asked my doctor if I could have MRI but she said she should treat the vitamin D deficiency and see if the cause is lack of Vitamin D. I will use those pills 4 months more and see my doctor again.

 

I hope all of us will find a solution to make our life better than it is now.

 

 

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John Haa, Community Member
9/22/10 11:55am

Nearly everyone is vitamin D and magnesium deficient. It affects everything, it seems. Possibly because every cell in your body has a vitamin D receptor. You can not get enough vitamin D from food. It must come from UV light. Twenty minutes in the sun or a sun tanning machine can produce over 20,000 IUs of vitamin D.

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ron, Community Member
10/ 8/10 10:05pm

I know what your going through,because i'm there right now.My vit D is 17,I have the same symptons.I do know with MS you have a fluid level called myticen if has a strong connection to MS,maybe you should have it checked,just to be safe. Dropomine is another connected to parkinson. Jus some added imfo for you.                                                                       

 

 

                                                                                     

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tootired, Community Member
11/ 6/10 6:43pm

Hi,

 

I'm a 31 year old woman.  This summer because of my age and wanting to avoid wrinkles I used put 30spf on my face and 15 spf on my body every morning before I went outside.  I had started feeling tired out for a while and needed naps every day.  Then at the begining of august I was just overcome with fatigue and could barely get out of bed.  The mental fatigue is the worst it feels like I'm sleep walking through my days.  All my tests we're normal except I had a vit d level of 15.  The doctor put me on 50,000 iu a week.  I've been on that for 10 days and only taken two pills.  I have noticed an improvement in my energy levels but I'm still tired all the time.  Can anyone tell me how long it will take for me to feel better again and have mental clarity?

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Lisa Emrich, Health Guide
11/ 6/10 10:39pm

Hi too tired,

 

It's good that you have already started to feel some benefit of the vitamin D.  However, it does take quite awhile to build the levels back up in your body's reserves.  This can take a matter of months.

 

Keep with it and certainly discuss any continuing or changing symptoms with your doctor.  Hope you continue to feel better.

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peace girl, Community Member
11/ 6/10 6:50pm

Hi Lisa,

Although I've not been diagnosis-ed with MS, I feel pretty confident that I may have it.  My doctor did check my vitamin D levels, since my complains started with feeling sad, body fatigue, muscle spasms, tingly limbs, etc.  I currently take 4000 IU.

 

But I wanted to respond to you because on 2 occasions recently I have been told

that those of us who have low vitamin D would experience the benefits of it if we took 50,000 IU 1-2 a week.  A naturopath recently told my brother-in-law and my friend who is a nurse with sarciodosis both said that the higher dose less often is better because otherwise its often not absorbed through the body.

Regardless, you should check with a healthcare proffesional.

 

As for all of your symptoms leaving you feeling low, I hope that you feel relief and joy this weekend.  Do something nice for yourself- you deserve it!

 

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Lisa Emrich, Health Guide
11/ 6/10 10:37pm

Hi Peace Girl,

 

Thanks for writing.  I sincerely hope that you don't have MS, but if you do, then know that there is plenty of support available.

 

I was amazed at how much my symptoms improved with taking high doses of vitamin D.  Over time, I've changed my routine somewhat and currently take 10,000IU daily.  It has raised my levels and helped to keep them high.  I hardly ever get muscle aches anymore.  My depression is much less than it was two years ago.  And just over all, my health feels better.

 

Hope you begin to feel better soon with the addition of vitamin D and do let us know when you learn more about the MS.

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tina starrett, Community Member
12/14/10 9:37pm

hi my name is tina and i have then same promble but i am tired all the time realy dont feel like doing anytging and i feel old witch i should not cause i am only 35 years old my doctor saids that my vitamin d is like at 16 and she is wanting me to take 5,000 to 6,000 vitamins daily i have pain in my arm that is right where you kind of bend i drink 3 to 4 cups off a day some times the whole pot to say a wake i can relate some but not like yours i wish all this would go away i ask my doctor if i start to drink milk again even thought i hate milk if it would work she said that my the time i have got all that milk in me i would weigh about 3,00 pounds i was taking the vitamn d pills but i got a second a pinoin and they told me that 6,000 vitamn d is way to much but my doctor doctor wants me to take it cause my vitamn d is realy low what am i sopost to do

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Tracy, Community Member
1/ 9/11 6:20pm

I am one sad, tired, achy, numb, spastic, weak, brain dead person these days.  I had to laugh when I read this one!

 

My poor story is almost 12 years old and longer than the NIV- I'll work on the short version....

Gall bladder issues- after 7 doctors they ran the right test and found it to be not working at all and attaching to my intestines- Surgury next day-removed.

soon after returned to new GI doc complaining of pain after eating only different pain, and it had moved more center...ERCP fishing expedition ( DO NOT EVER AGREE TO AN ERCP, I FOUND OUT TO LATE FROM SEVERAL SPECIALIST THAT THIS TEST HAS MORE NEGATIVE SIDE EFFECTS THAN THE TEST HELPS)

This triggered my first full blown pancreatic attack! for those who have not had the pleasure of experiencing one of these I would much rather sign up for giving birth on a daily basis over 5 days of one of these attacks.

Final diagnosis- blockage of the main bile duct- professional name: Biliary Dyscenitia, and spincter of odie dysfunction....with all the long term damage plain old 'chronic pancreatitic' fills in all the blanks.

 

Here is where we all seem to fall into the same category- along the way when I was having terrible headaches had an MRI done-this showed white foci on the stem, or white scaring- which in turn brought up the awful "MS" converstion.  Without insurance this is where everything got left- but over time I was having several dizzy spells, numbing of limbs, leg giving out when i would stand up and several other symptoms.

 

Night vision was aweful, exhausted, every joint hurting, 2 hrs of doing anything would put me down for a day- if I tried to work a full shift I couldnt pull myself out of bed until I HAD TO GET UP FOR MY NEXT SHIFT!

 

all of the above while still having the pancrease issues and pain....ok enough whining...

 

turns out because my pancreatic enzymes and yes even insulin are not able to get into my intestines to help with digestion- because of this I now have what is called malabsorption syndrome- I am absorbing my food into my fat tissue vs getting broke down properly and going through my blood system.  k, so after that very long intro: one of my issues was hello VITAMIN D DIFFICIENCY...

 

I started taking 4000 iu of liquid form d3 daily and alot of my skeletal issue began to get much better...

 

I am not saying I may not still have ms, and with my disease I have so many other issues, problems, and pains but I can tell so many of you whether it is fibromyalgia, RA, MS, celiac, etc.  adding vitamin D to you daily regime will give you some relief from some of you issues you are fighting....when one thing goes haywire with your body eventually like a waterfall several more will follow.

 

Until they find a way to work with friable duct, my problem will never be fixed...(weighing out the pros and cons of a pain pump currently) but having gone years without insurance-and doing what I could to listen to my body and research without becoming paranoid- LISTEN TO YOU BODY, BECOME AN ADVOCATE OF THE SIMPLIST THINGS LIKE GETTING YOUR VITAMIN AND MINERALS UP TO PAR, AND LEARN TO SMELL THE ROSES ONCE IN AWHILE!

 

Whining will not fix it, it will drag you down- work up your own charts, and get to work- if at first you dont succeed try try again!

 

Good luck to all of you!

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Katkan, Community Member
2/ 3/11 11:20pm

Hi Lisa, I was DX in 2007/2008 with RRMS. A year later, my Primary ran some vitamin tests and I was VERY low in Vitimin D and B 12. Had the same symptoms as everyone who responded to this issue. She prescribed both right away. I need to take ALOT more D, but I give myself weekly B 12 shots. My Neuro Doc won't even discuss it. Time to find someone else. I don't feel well right now so I won't write much. Having a relapse from a UTI. Very tired. Thank God for this site. God bless us all, Katkan

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Lisa S. from Texas, Community Member
6/14/11 12:20pm

Hi Lisa....

    I to have M.S. and just like you my Vitamin D levels are very low... This is the third time in the past 6 to 8 months that I have been put on 50,000 IU I will have to take it for the next 2 months then I have to go back and take 2000 IU until my levels are better.... I have done some reading on M.S. and low vitamin D levels and there are more than you think that have the same problem.... I guess it is just in our future to take higher levels of vitamin D for the rest of our lives.... All I know it is going to get expencive cause as you know medicare or medicaide do not cover this drug... Oh well I guess the only ones that can really afford M.S. is the rich.... lol... I do feel better after I take the extra vitamin D but when I'm low on it I have fatigue all the time... I wish that they can find out why and fix the problem...

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nuttinbutjesus4u, Community Member
7/ 4/11 6:05pm

I'm so blessed to have come across this. I've been dealing with so much these past 7 yrs but it wasn't until about 8 months ago things have really been falling apart for me... health wise. I couldn't eat or drink for 3 months, i was in so much pain if i ate/drank anything. After many,many test they say I have acid reflux. I've lost over 30 lbs. I still cannot eat many things or drink for that matter. I don't drink alcohol (8 yrs alcohol free), don't smoke, don't drink pop or carb drinks, I still have major pain with food. About 2 months ago things got worse. I lose feeling in my legs and feet. I started with pain in my left fingers that felt like pins and needles that move up my arm into my neck. I drop things, fall, have chronic pain in my lower back. I have joint/muscle pain. Some days are good and some days I can't walk,sit, stand or move. I had my thyroid check (came back fine), I had xray on left fingers (came back fine), blood work(all came back fine), MRI (came back fine), blood work to check for cancer ( yes, once again, came back fine). My family/kids don't understand the pain that I am in sometimes. They don't understand at times I'm so hungry and want to eat but if I have to chose between eating and suffering or not eating and being hungry... I chose to be hungry because the pain is unbearable. Oh, my gall-bladder was fine also. I'm almost lost for words, not wanting to give up hope but things seem to be getting worse, with no answers. I can't take pain meds because of my terrible digestive problems. I'm constipated most of the time, NOTHING helps. I'm not sure anymore whats worse, not knowing what is wrong with me OR finding out what is wrong and then ... not being able to deal with the fact that ... there is no hope.

 

                                                                                        Not giving up, hopeless, but yet still hopeful!!!!! God bless.                       

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Julie Blichmann, Community Member
12/26/12 3:06pm

I realize this is well over a year since your post, so I hope somehow you will get this response.  If not, it will be for the many others that chance through here...

 

You (along with many others here) have many symptoms consistent with Lyme Disease.  You need to seek out a Lyme Literate MD and rule it out.  Lyme is the great imitator, and can cause a myriad of symptoms.  I was originally diagnosed with Hashimoto's in 2001, with RA in 2006, then MS this past January.  I finally got a correct diagnosis of Lyme Disease in June after taking a Western Blot test through Igenex Lab.  The spirochete that causes Lyme, can also cause lesions on the brain (which I have).

 

It is important to seek a Lyme Literate MD, as most practitioners are either unfamiliar with treatment protocols, or they will follow the IDSA's ridiculous recommendations, and the infection will continue to cause issues.

 

If you really want to learn how Lyme Disease is the most overlooked illness, watch "Under Our Skin" on Hulu.com.  It is free to watch (except on mobile devices).

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ana, Community Member
7/ 5/11 11:23am

Hi everyone, i just found that i maybe have an MS (lesions in brain and spine, and all nice symptoms that go with that...). I started reading lots of stuff (i have a PhD in biology and therefore i am a real nerd) and of course came accross lots of information about nutrients, or lack of, and MS. Some people suggest that nutritional defficiencies might be a cause not only of low intake but also of bad absorption of nutrients. For example, in case of celias disease or gluten sensitivity you can stuff yourself with nutrients all you want, but very little gets into your blood. Any of you guys that fail to raise the levels of D3 has also gluten sensitiviy problems? Please check it out.

 

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ana, Community Member
7/ 5/11 11:25am

you can see my brain fog at work. i meant that nutritional defficiencies can be caused not only but low intake, but also by low absorption of nutrients. Sorry :(

 

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Mrs A, Community Member
10/12/11 12:42am

people with suspected Vit D deficiency should get their alkaline phosphatase levels checked.

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TAM, Community Member
11/15/11 10:42pm

Why Mrs A?

 

I ask because I was diagnosed with Vitamin D "insufficiency" Level 23 back in May 2011 and I noticed my alkaline phosphates were below normal range in my lab work. The doctor said her concern is if it is high, not low?

 

What is the correlation between the two?

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Momster, Community Member
7/19/12 12:01am

If you are calcium deficient your body actually breaks your bones down to use the calcium and magnesium for cellular work, which can lead to fractures and osteoporosis. All muscles, including your gut and heart rely on calcium.  So, body takes it from the bones and this causes an elevation of the alkaline phoshpate, therefore a bad problem, and a bad deficiency.  Do not wait till it is so bad. Eat a diet rich in D, magnesium and calcium, and get 20 minutes at least of sunlight each day.  Trust me, your body will stop bitchin and thank you for it.

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kimbba, Community Member
11/27/11 11:16pm

I have had MS for 6 or so years now. I low TSH due to I had my thyroid out because I was running way to high and could not control it, I have very low vitamin D. I wa off my vitamin D med because the summer months sun gives me what I need. I was just tested agian because I have been exhausted and have has a lot off muscle and joint pain. I am thinking it has to due with my vitamin D, even though I have never had this much pain. In the past it has taken me about a month or so to get back on track with my RX vitamin D and feeling better. I know going for short walks and streching hep the pain. You know the saying (if you don't use it you lose it) It is the truth, just bare with it. If you don't feel better in at least 2 months, go back to you dr!

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Kate, Community Member
2/19/12 5:34am

Hi Lisa,

I think you may be actually suffering from Menopause - that's if you are around that age. Look in the Library for the book, "What Your Doctor May Not Tell You About Menopause" by Dr. John R. Lee

All the symptoms you mention could be related, and if you look in the book you will see that this Doctor is extremely smart when it comes to women's hormones and the effect that they have on our bodies.

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SuRa33, Community Member
3/ 8/12 5:21pm

You guys might also want to look into the possiblity of Lyme Disease. This illness can also mimick MS and cause a deficiency in Vitamin D and Vitamin B12 levels. Another possiblity would be toxic mold exposure.

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jennamartine, Community Member
5/ 8/12 4:26pm

I am a 26 year old female with no history of any medical problems at all (except my back goes out once in a while and I go to the chiropractor to fix it).

 

About 2 weeks ago, I woke up in the middle of the night and could not feel my legs.  They were numb, cold, and tingling.  I can move them fine and walk fine and have no balance issues.  I went to  the chiropractor thinking it was a pinched nerve.  He adjusted my back but told me I probably have MS.  It really scared me so I went to the ER right away.  They refused to do an MRI (needed more evidence) and sent me home after drawing blood.

 

I went to my primary physician and he said the bloodwork was fine and he had no idea what I had.  He put me on Prednisone and Nifedeprine, neither of which helped at all.  I just returned to him today and he took me off of both and said it was pointless and maybe I should learn to live with this.

 

I made an appointment with a neurologist but that isn't for 2 more weeks and I'm very scared.  Everyone just tells me I probably have MS and need to live with it.  The women at work say it's probably a brain tumor and I'll die.  I think they're gloating about it.  But moving on...

 

I have numbness in my legs, tingling in my feet, and a cold left foot.  I get joint pain too, very mild right now, even in my hands.  My heart has been beating irregularly a bit and my blood pressure at the doctor's about 4 hours ago was 90/60, which he said was not a big deal but I feel a bit lightheaded.

 

What should I do?  Any ideas?  The doc did say my Vitamin D level was 15, which is supposed to be low, but he wasn't concerned and said it couldn't cause my symptoms.

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Lisa Emrich, Health Guide
5/18/12 3:54pm

Hi Jenna,

 

Oh my goodness, your coworkers sound rather frightening (and perhaps annoying).  The good news is that you will be seeing a neurologist very soon.  This doctor is one who can help figure out what's going on.  Be prepared for more testing, but you will be okay.  I can understand your fear as I've experienced it before too.

 

Regarding your vitamin D level of 15.  Your neurologist will probably want you get that level higher.  Mine is now somewhere in the 62-68 range.

 

Please come back and let me know how your visit with the neurologist goes.  Hoepfully you will have a few more answers then.

 

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Chris, Community Member
6/ 8/12 5:28pm

Well, I started taking Carlson's 4000IU Vitamin D capsules five days ago.  My D levels have tested in the low 20s for three straight years.  I'm 45, a guy, and struggle massively with anxiety, depression, fatigue, pain.  I feel really out of it, almost completely dysfunctional.  I had been taking a "dissolve-under-the-tongue" brand of D with no results.  But after 4 days on this Carlson's capsule, I have noticed a definite decrease in my symptoms, especially fatigue and pain.  It's quite miraculous.  (I also have sleep apnea, or constant panic awakening, or something, though I am not overweight, and that seems to have decreased a bit as well over the past four days.)  I don't want to say it's a miracle, or completely not attribute it to placebo, but I've been through the ringer with antidepressants and herbal supplements.  I've tried almost every SSRI, SNRI, and every herbal or other "natural" supplement associated with reliving my symptoms in copious amounts, to no avail.  If it turns out much of this was due to vitamin D deficiency and taking that supplement is all I need to do to correct it, praise the gods.  I wish you luck and hope you find a solution to your issues.  

Chris 

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Lisa Emrich, Health Guide
6/10/12 11:22am

Chris,

 

That's great to hear that you are already feeling a difference!!  It didn't take long before my pain was decreasing after I started supplementing with vitamin D.  But it took a very long time to get my blood levels up to where my doctors wanted them to be.  A couple of years, in fact.

 

Best of luck to you,

Lisa

 

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Chris, Community Member
6/10/12 8:19pm

Lisa:  

 

Thanks for replying to me.  What did you notice as the main differences after taking D?  And how long did it take?  I'm still not sure if my anxiety is "hiding" someplace in my body and I am imagining all of this.  Did you notice decreased fatigue, anxiety, depression at all?  Do you feel different now that your D levels are higher?  I've had zero luck with any supplement so it's hard for me to believe that this is doing something.  Be glad to hear any specific feedback you have about your situation.  

 

Thanks,

Chris 

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Lisa Emrich, Health Guide
6/11/12 8:46pm

Hi Chris,

 

The biggest difference I felt quickly was less pain "in my bones."  I was much less achy and sore.  I'm not sure that getting my D levels up has effected my depression or anxiety levels, but I've tackled those for years. Fortunately, antidepressants are effective for me.

 

My fatigue is less now than it was back in 2008, but I've made other changes since then which probably made the difference.

 

It's great that you are feeling better!!  Whether it's from the vitamin D or anything else, good for you. 

 

One thing I will do more recently is, if I begin to feel a little sick (ie. catching a cold), I will take extra D and it seems to help. 

 

Hope you continue to feel better and better!!

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Vida, Community Member
7/21/12 11:13pm

You have no idea how thankful I feel right now reading everything posted here. Could it be that I am not going crazy after all? I am 45 and was diagnosed with gluten sensitivity over 10 years ago (always had "stomach problems" since I was a child). About 3 years ago I began to have weird symptoms which became worse over time- really bad joint pain (some days it is hard just to get out of bed), sever fatigue (I am usually extremely energetic and always on the run), difficulty concentrating, definitely brain fog, bumps on my head (just under the skin), small pimple-like breakouts which come and go, scaly rash-like skin on my face also comes and goes otherwise my skin is clear, I get depressed- but I have been associating it with the difficulty of dealing with the pain and helplessness of the "days of fatigue" when all I can do is sit, rest and pray that I get better ASAP. Most recently have been having really bad tingling down my arms- it feels like a pain that shoots from the middle of my back and radiates out. Doctors (3 rheumatologists)couldn't tell me anything definitive- maybe fybromyalgia, maybe lupus. One MRI of brain showed a "UBO" (unidentified bright object) which I had never even heard of. Will ask for MRI of spine (after reading notes above). After 13 years of exceeding goals at work (always high reviews and several promotions)- I had to take a medical leave from my high level job (I just couldn't keep up- especially with the fatigue and mental fog). They denied my leave and I didn't get paid because they said I did not have a definitive diagnosis, just the symptoms which I had been reporting to my doctor for over 1 year. I was devastated and decided not to return to my job (I was unable to perform at the same level- and maybe it was the depression, fear and/or my pride but I didn't want to let my work performance deteriorate even more). During the past 2 years the symptoms have continued and I have just tried eating well and exercising on the days I don't have too much pain. Just went for some bloodwork and was told my Vit D is still low (was 14, now 27) and I have low B again (have had shots in the past). Reading your comments helps me realize that I cannot give up just because I feel powerless- and will continue to focus on being my own advocate for living as healthy as possible. Thank you!

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Julie Blichmann, Community Member
12/26/12 12:19pm

You need to seek out a Lyme Literate MD and rule out Lyme Disease.  Lyme is the great imitator, and can cause a myriad of symptoms.  I was originally diagnosed with RA in 2006, then MS this past January.  I finally got a correct diagnosis of Lyme Disease in June after taking a Western Blot test through Igenex Lab.  The spirochete that causes Lyme, can also cause lesions on the brain (which I have).

 

It is important to seek a Lyme Literate MD, as most practitioners are either unfamiliar with treatment protocols, or they will follow the IDSA's ridiculous recommendations, and the infection will continue to cause issues.

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irene, Community Member
12/ 3/12 9:05pm

i take vit. D3 12,000 mg per day it took a couple of months and i do feel a little better i also STOP EATHING red meat pork  all dairy for the last 2 months i can stay awake all day thats good for and i lost alot of weight

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My Bariatric Life, Health Guide
12/ 8/12 2:35pm

Hi Lisa, I don't have MS as you probably are aware. However, I do take a lot of Vit D3. I also have some similar symptoms with my legs. So I wanted to share my experience with you -- hope it is helpful.

 

I take 10,000 IU of Vit D3 daily (1 casule of 5000 IU morning and evening). This has defiantely made a difference in my low energy levels. Although taht is not your complaint, I just wanted to share that I have to take a very high dosage to see therapeutic benefit and that is not uncommon. I mention it fo ryour consideration.

 

As far as my legs, long story of tingling, pain, and numbness for a few years and docs being unable to resolve. We finally were going to try pain injections in the spine, quite a controversial procedure. As luck would have it, my employer switched insurance providers and my physician did not participate in the new insurance. During the time that I was waiting for an appt with a participating specialist, I had begin using magnesium citrate powder. After a month, I had no more of the synptoms with my legs.

 

I began using the magnesium citrate powder for constipation, totally unrelated to the leg problems. But it resolved all the issues with my legs. If I stop taking it, the pain, tinglinging, numbeness returns. I never have gone for those pain injections.

 

Someone in the healthcare field had told me that researchers have found a magnesium deficiency in RLS restless leg syndrome sufferers. Although I was ruled out for RLS, the magnesium citrate worked wonders. Ergo, there must be some correlation.

 

Perhaps worth considering a try. I recommend the powder in a glass of water, not the pills/capsule.

 

I hope that this helps.

MBL

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Lisa Emrich, Health Guide
12/16/12 12:44am

Hi MBL,

Thanks so much for mentioning magnesium citrate. Magnesium is a common "alternative med" for spasticity and other muscle problems in MS. In the four years since I posted this question, my vitamin D levels have greatly improved. In fact, my most recent blood work showed that my D levels are at 76 now. I've been taking 10,000 IU of D3 daily for almost two years. Apparently my body needs that extra amount to be helpful. I haven't felt the same symptoms mentioned here in a long time. I'm so glad that my doctor tested the D levels way back in 2008. Something that I think all folks with autoimmune diseases and other disorders should do at some point. Vitamin D deficiency is way too common.

Lisa

 

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By Lisa Emrich, Health Guide— Last Modified: 09/16/14, First Published: 09/18/08