i was found to have a 12.5 count of vit D and was prescribed 50,000 units-2 once a week for 6wks then i week which i have just started. i'm still waiting for the results of my last blood work. i do know i'm feeling much better but we with ms know that could be for any number of reasons. i have the ultimate faith in my neurologist so i'll just keep takint the pills until he tells me differently-djax59
Hey Lisa,
Thanks to your posts, I called my rheumy and asked that next blood test they measure my Vitamin D level. I guess I'm sort of assuming they should already know all this information that you are sharing here? It kind of makes me want to up-the-dose right now! I'm only doing 1000 just the over the counter version. Wouldn't that be great if something like lacking Vit D is why I'm feeling so lousy? 
Hi Nancy,
That would be cool if vitamin D deficiency were the cause of your feeling lousy. I'm not glad that you're feeling lousy, but the thought of having a reason and addressing it sounds really good.
My rheumy was telling me that she was very big on vitamin D back when 10-12 ng/mL or so was considered sufficient. She recommended much higher levels and more supplementation and she says that others thought she was a "quack."
Apparently she had one patient who had really bad fibromyalgia whom she tested for vitD and she put her on high doses. The patient felt that it was a "miracle cure" for her and relieve a lot of her pains and discomforts.
I didn't mention it, but I found several journal articles which talked about possibility that many people are misdiagnosed with fibromyalgia when they really have vitamin D deficiency. Interesting I thought.
If I were you, I'd really be tempted to up my daily D intake. I also read that 1000IU simply isn't enough for those of us with autoimmune diseases. I think that I really did up my daily intake on my own gradually from 1000 to 2000 to 4000, eventually to 5000 for the fall and winter. And it still hasn't been quite enough. :)
Hi Linda,
I'm glad that you could talk to your neuro about this. There is so much to consider with our health (whether we have MS or something else) that unfortunately some things might tend to fall through the cracks.
As comments are also coming in through my personal blog, it seems quite apparent that several of us with MS were severely deficient the first time we were checked for serum levels.....and is it not easy to get those levels up.
More importantly, we have to be "almost a doctor" [I use this phrase often with my physicians] and also health detectives. I was really really in a painful bad way recently and my neuro is working to get me copaxone. He never suggested steroids and I know his only plan is hospitalization and major infusion. I went to my GP with a sinus infection and she gave me a steroid shot. Well, today I am doing Yoga without pain meds and pain free. Even if it is for one day, I'd be grateful for the mobility. She seemed to understand this. It's almost a full time job.
Lisa,
This is a great subject. I've been up and down in my D3 intake for several months. My gp said my serum levels are high enough; my neuro doesn't believe in vitamin therapies.
We just got back from an amazing trip in India. I was fine until yesterday. I guess it could be a total collapse after the travelling, returning, and trying to get right back into things here. I've upped my D3 to 1200 IU for the last several days. Now that I feel so weak, I'll try to add to it gradually and get up to 4000 IU. Our problem here is that the largest pill we can get is only 400 IU, so it means taking a lot of jell-caps, dry pills, or whatever I can get.
Anyway, here's to feeling good.
Hi Maris,
Wow, a trip to India. You will have to tell us more about that. I do imagine that you are extremely exhausted from it.
Is it possible to order supplies of vitamins online and have them shipped to you? I am not familiar with any limitations or extra shipping charges necessary.
The company I just ordered 5000IU capsules of vitamin D (they have many choices smaller) is called Puritan Pride. At the bottom of their home page are links to their online shops based in Switzerland, Austria, or Japan. Is it possible to order from one of these countries? Just thinking outloud. :)
Hope you recover from your trip quickly. It's good to see you again.
What a complicated topic this is. And like so many other important considerations while living with MS, I search here and there in between the busier parts of my day and it never gets done. Thanks for doing the hard work and getting this all in one place. I've learned more here than all of the weeks I've been surfing on it. And it isn't the same recommendation I came out of my neuro's office with. So I have specific Qs to bring to him on my next visit. A very important resource this is. Thanks for authoring it! ~Amy
Thanks Amy!
I had hoped that this information would be useful. I'll admit that I read far too many research articles and related pieces to find a few select ones to draw from and provide as further reading resources.
At least 2 out of 3 of my physicians agree on recommended serum levels. Now my job is just to get it there. :)
I just read your article, very good information. I pulled out my lab test to see if I had the right vit. D test. It says: 25-hydroxyvitamin D2 <4.0 ng/ml
25-hydroxyvitamin D3 35 ng/ml
Test performed at Mayo clinic lab, Rochester MN. Normal values 25-80.
I requested the test myself. My rheumy was irritated and said "it's just the soup d jour" He never mentioned the results, but I get copies of all my labs. I have RA, and now have switched to a different rheumy. Does this appear to be the correct test? Your article made me realize I need to take this more seriously and take vit.D. Thanks, Ronda
Hi Ronda,
Yes, that's the correct test. Not all labs will break down the results into the two different numbers. My primary doctor looked at the D3-specific number and the total. But she was the one not so concerned with my current "normal" levels.
My rheumy and neuro on the other hand still want my numbers above 50 on that scale of 25-80 being "normal." Anything between 50-70 ng/mL is considered safe and desirable (in my case). I also didn't think so much about vitamin D until I was so severely deficient and feeling a huge amount of unexplained pains.
I'm kinda glad that you found a new rheumy because that first one sounds a bit arrogant and less than open-minded (in my quick opinion). Getting rechecked is always important when you are trying to increase your serum levels. Plus it's kinda nice to see positive effects and progress.
Thanks for stopping by. Having RA is no fun, but I hope that you are doing well.
Lisa
Thanks so much Lisa. Yes, my ex-rheumy was arrogant. My opinion, insights were always incorrect to him. I plan to take my vit. D everyday now and get retested. My new rheumy says I have the potential to get FMS given some of my symptoms. He says a good sleep schedule is vitally important as well as Vit D. He asked me about mine, and I said it was normal. Now I know it's better to have an optimum level.I've only had one appt. with him. Thanks again, and take care
Hi Ronda & of course Lisa,
When I got my definite dx of MS I also got one for FMS. My neuro said all my pain came from the FMS, but has since understood that it's a combination of the 2. I can usually tell which pain is dominant. The last few days it's the FMS. It's a real killer this time. I haven't felt that the D3 (now 2800 IU) does anything for the pain 
. I WISH SOMETHING WOULD 
!
Wishes for pain-free days,
Maris
Prescription vitamin D2 is not easily absorbed; D3 (cholecalciferol) is MUCH better, and that is documented by all the studies. Even the Vitamin D Council does not recommend D2. Please see http://www.vitamindcouncil.org/researchMS.shtml
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my d levels were at 12.5 and i was prescribed 50,000 unit-2 twice a week for 6wks then 1 per week which i have just started-still waiting for the results of my last blood work to see if it's doing any good. i do know i'm feeling better but as we with ms know that could be due to any number of reasons so i'll just keep taking my pills 'til somebody tells me differently. djax59
my bad i didn't mean to post twice but the 'puter screen told me the first one was an error so i did it all over again. sorry
Hi DJ,
At first I was prescribed the same 50,000IU capsules today 3x per week for a month, followed by once a week. Then (I forget how long afterwards) we were supposed to go to every other week but I noticed a definite increase the symptoms which had subsided by starting the vitamin D, so we went back to weekly (when I remembered to take it).
At some point I added 1000IU daily of OTC vitamin D supplements; and when my test results came back "OK" last summer, my doctor did not renew my prescription and I went to 5000IU daily of OTC vitamin D (which is D3).
That apparently wasn't enough to keep my levels increasing, so we're back to 50,000IU prescription once weekly on top of the 5000IU daily. If this doesn't increase my levels, I'm not sure what will.
sure sounds like it ought to do something--i've been out in the sun more lately(what i call collectin skin cancer) so i have some color to my face which makes me look healthier. so i can look in the mirror and convince myself it is so. there's a lot to be said for psyching youself out.--here's to vit D.
Lisa,
I love to read your post!
I have been under the weather lately, not MS related. However about a year ago my regular MD started me on VD3. I am up to 9000 IU's a day, during my last visit and blood draw he told me he might increase it.
It is amazing how much we learn each day to help in the fight aganist MS.
Candy Lee