Vitamin D and Numbness

[cvms]

Last fall I had my vitamin D level checked and it was 41. I had been having numbness and weakness in my legs and hip at the time. My doctor ordered me 50,000 u of vit D once a week. The evening after I took the first dose my numbness got worse. It progressed into an attack. I never took another dose. I wasn't sure it was the vit D or just coincidental timing.

Now I'm on Tecfidera and doing awesome with no residual symptoms. I saw my neuro this week and he tested my Vit D level again. It was 31. He had me once again try the 50,000 U of Vit D weekly. Well, I took the first dose yesterday and by the evening my legs were starting to feel weird, cool numbness. It's not getting worse but still there today. I am convinced it's from the Vit D. I have been taking 4,000 U daily before this with no issues.

Has anyone else had something similar happen? My husband thinks the vit D is ramping up my immune system and making my ms worse. Maybe I have low vit D for a reason. I'm not sure what to think! Thanks

[22cyclist]

You may be having a side effect to some of the ingredients in the vitamin D, such as additives. Perhaps you can ask them if you can just try the 5,000 units per day since your vitamin D levels are not incredibly low, and see where they come back in a month. Buy the same brand you are taking with the 4,000 units.

Its worth a try.

Lisa
Moderation Team

[dennissr]

Years ago I came across some information that led me to believe that vitamin d might be helpful for MSers, so more than 5 years ago I asked a panel of neurologists specializing in MS what they thought about it.

They scratched their heads and turned to each other for input. No one had a clue.

Today most MDs are stressing the need for Vitamin D supplementation. I have not followed the research but apparently there is some new findings out there but before I started to take injections I would thoroughly research the data.

Now everyone is a supposed expert when there were none 5 to 7 years ago.

After exhaustive research on Vitamin D years ago I came to several observations:

1. Sunlight is the best source and perhaps the only source that confers a benefit.

2. No one knows how much sunlight you should be exposed to.

3. There is a notion that people born in northern climates develop MS because of vitamin d deficiency since they see no sun for much of the year.

[aspen]

I had to ramp up slowly with vit. D. Not sure why, but I started at 2000 iu I had headaches. Maybe it's too much in one dose and you can increase gradually?

BTW I was at 42 -- only told to take the 2000.

[MSer102]

Both of your vitamin D results were above the minimum recommended level for the general population which is 30 ng/ml. There have been several recommendations from MS researchers that people with MS should have a level between 50 and 80 ng/ml. When you were already at 41 it seems like an over reaction by your neurologist to put you on 50,000 IU weekly just to get you from 41 to 50. That's what doctors do when someone's level is around 10 not 40.

Your vitamin D level is below the recommended level for someone with MS but not out of the recommended range in general. So I can't think of a good reason why you shouldn't be able to take OTC vitamin D3 supplements to get your level up to at least 50 ng/ml. You can buy 1000 IU gelcaps and start by taking just one to see how you do. Then you can add more up to maybe 4000 or 5000 IU a day and have your level checked again in a few weeks. If that works you can buy higher dose capsules.

The 50,000 IU weekly would be about 7000 IU a day. It might be easier on your body to take the vitamin D daily and starting with a lower amount every day to see how you do. I can't think of any good reason why you shouldn't be able to take your vitamins daily. That's how most people do it.

Normally I would say to check with your doctor first about making the change. But since the 50,000 mg prescription supplement isn't agreeing with you and you don't intend to keep taking it anyway there doesn't seem to be any point in "asking if it's OK". I think you should just be able to tell your doctor the prescription didn't agree with you and you want to start supplementing more slowly. You aren't in the danger zone by any means so it sounds like you have time to do this on your own.

Your supplement doesn't have to be expensive. I take Nature Made D3 gelcaps I get at Target and the Vitamin Shoppe has its own brand which is affordable too. I can keep my level at about 70 on 3000 IU per day.

[aspen]

cvms and MSer102, I wonder if we are operating here using different units? Where do you live?

My result was 43 nmol/L. The range of acceptable vitamin D levels in nmol/L is 75-250. I'm wondering if cvms's lab also reports in nmol/L.

If so, then we're at a little over half of the bare minimum, hence the vit. D therapy.

[cvms]

My results come in ng/ml. The normal range says 30-80. I have heard it is best to be above 50. I live in Minnesota.

My best D level has been the 41. That was after a summer out in the sun. The previous spring I was 29. I have been taking 4000u for couple months now.

What I think is crazy is the almost immediate numbness, when I have had none, after taking this large dose. I haven't heard of anyone having this.

Thanks for everyone's replies! I will definitely take the advice. I think I will just add in another 2,000 for now. I just hope this weird sensation/numbness in my legs goes away as the dose wears off!

[AMJ]

CVMS, I was told that Vitamin D supplements can deplete your magnesium levels. Try taking a magnesium supplement with your vitamin D and see if this helps with your numbness. I always take some magnesium along with my Vitamin D, if I don't my spasms in my leg starts to act up.
Good luck.

[Tracelyn]

I too am in agreement that perhaps what you are feeling is due to an ingredient in the Vit D2, not Vitamin D itself.

I take 10,000 UI's a week for my D levels and I do not experience any numbness. Honestly, I feel better taking the vitamin.

[MSer102]

cvms and MSer102, I wonder if we are operating here using different units?

That's an important point! From what I've been able to tell, the national lab standard in the US for vitamin D is ng/ml. The standard in Europe appears to be nmol/L. So it sounds like the standard in Canada is also nmol/L? I don't know what units are used in Asia, Africa, Mexico and Central/South America. Maybe members who live in those areas will post and let us know?

Thanks for bringing this up because it is important to know what units are used in what countries.

So it looks like the recommended ranges for vitamin D are:
30-80 ng/ml (some sources go up to 100) US and ?
75-250 nmol/L Canada, Europe and ?

[aspen]

CVMS, I also take magnesium supplements at the same time as my vitamin d because I read "somewhere" (likely here) that it would help. I started looking for info when the vit d was causing headaches. The headaches did stop ... don't know if it was because I increased the vit d slowly, or because the Mg helped.

MSer, it surprises me that the lab standard in the U.S. is a metric measurement! I didn't think the U.S. did metric. Also, I think the actual standard may vary lab by lab, even within our province. That was the range given on my labs.

[emily06]

Vit D not doing well with me

I too had bad reactions when taking Vitamin D and was convinced it was causing my flare up when I took it. But my neuro was really pushing for me to take it. So I'd keep giving it another try to see if the previous bad times were a fluke. Now I know I'm not alone with that problem and I won't try to take it again.

[britsmom66]

No diagnosis yet, but...

When my gyn tested my Vitamin D last year, it was only 19, and he placed me on a script then suggested once it was finished I should get it over the counter.

I never had the numbness until recently and low magnesium mentioned above makes sense to me. I haven't had my D level checked since last year, but I no longer take the supplements. The numbness came over the past month and started in one finger and has spread to 3, with weakness in thumb and other finger and up my arm.

I also have the numbness in my legs as well. I'm going to ask my Neuro to do testing on magnesium and vitamin D at my next visit. This site gives amazing info!

[cvms]

I actually do take 300 mg a day of Magnesium Glycinate. I started it for my migraines but it really helps me sleep great too. For some reason the high dose Vit D causes me numbness. Last time it led to a flair but this time I was in a much better place to start (from being on Tecfidera) and was feeling awesome before I took it. That is how I know it's from the D. I definitely won't take that 50,000 ever again. I was doing fine on the 4,000 u so I think I might just stick with that.

I never thought about it being from something like fillers in that high dose. That's a great thought though. I try to eat minimal processed foods and no gluten/dairy so maybe the dye or something in it bugged me.

Emily06 - It is interesting that you too had the same issue. Makes me wonder if low vit D has something to do with causing MS or if people with MS have low D for a reason. Maybe it's low so our bodies don't get ramped up and attack itself. Who knows. Interesting though.

Thanks for all the great ideas. It's so nice to "chat" with others who are going through the same thing!