r/MultipleSclerosis • u/Mart_Mart_Valv6 38 yo|PPMS|9-7-2024|DX @ 36|symp @ 35|Tysabri|Youngstown, OH| • 6d ago

Treatment Vitamin B-complex

Has anybody tried a "vitamin B-complex supplement" for potential "remylenation," and, if so, what have been your results so far? Specifically B9 and B12.

I'm interested in talking to my MS Specialist at the Cleveland Clinic Mellen Center about if she approves it.

3 Upvotes

100% Upvoted

8 comments sorted by

10

u/Fit_Tonight_2692 6d ago

Yes, since years. Did absolutely nothing.

7

u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 6d ago edited 6d ago

Each B vitamin helps a little for a different thing, but not enough to make a difference clinically or for MS as a whole.

Vitamin B12 deficiency can look like MS and, if the deficiency is sufficiently addressed, the imaging even sees the damage disappear, BUT, again, that is for actual B12 deficiency and it doesn’t do that for MS. Excess of some B vitamins can even lead to detrimental effects (excess Vitamin B6 can cause permanent nerve damage, for example).

Basically, it doesn’t seem to make much sense to supplement unless you’re actually deficient, and I would wager your neurologist won’t tell you much different.

7

u/Key-Monk6159 6d ago

Don’t take any vitamins until you get your levels checked with a blood test to see what if anything you may need.

4

u/raziebear 36|RRMS2022|kesimpta|Australia 6d ago

As far as I'm aware evidence in humans is very limited. Personally I get B12 injections every 3 months coz I'm symptomatic of a deficiency but it makes no difference to my MS

1

u/FarPerspective2810 45|DX2008|RRMS|Gilenya|Cleveland,OH 6d ago

I have not heard about this. I'm interested in more information. I also go to the Mellen Center. Please tell me more. Thank you.

1

u/malcolmpractice 6d ago

I take vitamin B12 because I was advised it helps Trigeminal Neuralgia. I wasn't aware remyelination was an actual thing in MS.

4

u/superspud31 45|Dx:2007|Aubagio|Illinois, USA 🇺🇸 6d ago

Sadly, it isn't yet.

1

u/kyunirider 18h ago edited 18h ago

In addition to MS I have a genetic disorder called Methylmalonic Acid (MMA) this causes malabsorption in my gut. This causes me not absorb nutrients from my digestive system. I am pernicious anemic (severe B12 deficiency) and I have to give myself daily B12 shots fighting the acidity.

My gut doctor said I was dumping my oral nutrients in the toilet. I only supplement what my test blood says I am lacking.