Could a B12 deficiency be misdiagnosed as MS?

[zoefromsussex]

I have just been reading a list of symptoms associated with B12 deficiency and I have just about the lot! I was just checking it out as I had a 'slight' B12 deficiency during my last pregnancy which was left untreated & 4 months afterwards I had my first bout of ON and the MS diagnosis. I think they did test my B12 level when they did initial bloodwork and they said it was normal but do you think I should get a 2nd opinion before I start copaxone? I'm suspicious because I often have breathlessness and feel I need to gulp for air and I don't think thats anything to do with MS but it would fit with B12 deficiency.

[twopack]

I think you should go ahead and start the Copaxone but look into the B12 question as well.  The discovery or confirmation of one diagnosis tends to shut down further investigation of other pending concerns.  Sometimes it ends up being a big mistake.

If there is ANY chance some of your symptoms could be improved with B12 supplementation you need to know about it and get started treating with B12 AND Copaxone.

I just left a response on an update one of our members wrote back in December.  As it turns out, she has a B12 deficiency rather than MS but since her blood level results didn't match the severity of her symptoms, doctors initially dismissed that diagnostic possibility.

You might be interested in reading her account of the improvements she's had with some B12 supplements - and how others helped very little.  It's here: http://www.medhelp.org/posts/Multiple-Sclerosis/Long-time-no-hear-/show/1654360
I also left a link to some interesting information about B12 that Quix gathered for us when I responded to that topic.

Although it doesn't sound like there is good reason to question your MS diagnosis, there isn't a good reason NOT to look into the B12 issue either.

Good luck Zoe.  Maybe you'll be the next one leaving us a nice update :)
Mary

[Lulu54]

Zoe, keep looking at the information and figuring out what fits and doesn't fit for your particular situation.  Eventually you will be comfortable with what you know and how your treatment is going.  It takes a while and you are well on the way to that point.  hugs, L

[Red_Star]

"The relationship between vitamin B12 and multiple sclerosis has provoked much discussion over the years. It is known that vitamin B12 deficiency can mimic the symptoms of MS and that vitamin B12 is needed to maintain myelin. However, the case for people who do not have deficiency taking the vitamin as a supplement has not been demonstrated by research.

Some studies have shown that some people with MS are also deficient in vitamin B12. One study showed that vitamin B12 levels in the blood were normal, but were lower than usual in the cerebrospinal fluid of people with MS suggesting that they might not be able to metabolise vitamin B12 in the same way as other people."

Excerpt from MS trust UK  - Vitamin B12 (Cobalin-H, Hydroxocobalamin)

[zoefromsussex]

Oh I don't doubt my MS dx because I have so many symptoms and all my tests (LP, mri, VEP) point to MS. I just wondered if a B12 deficiency could be mixed in with it and I suspect it is. I was told I'd require B12 injections six weeks after the birth of my son but the doctor didn't mention it again and neither did I but I'm gonna chase it up on tues.

[Twinsmom06]

Good luck at your appoitment. My B-12 was not in the "low" range but my 2nd opinion thought it was low enough to warrent a B-12 suppliment just to be safe and I was also found to be Vit. D. defitient. I don't have a dx but they said my levels would not cause the leason load that I have so they don't suspect that would have been the cause.

Like the others...with the positive LP...I don't think b-12 would have any affect on that at all.

Take care:)

[zoefromsussex]

Thanks everyone. I'm seeing the neuro on tuesday so I'll ask him to check my B12 levels again. It's my last app with him as I don't really get on with him & my gp has agreed to transfer me to the ms specialist at the neurological centre. I had a positive LP & brain MRI but they didn't check my spine. I'm sure the dx is correct but I think the B12 could be an additional problem. I take a liquid B12 & iron supplement and I think I might start taking vit D3 soon but thats it for me on the supplement front as I eat a healthy vegetarian diet & I walk lots so I'd describe myself as reasonably fit on a good day!

[supermum_ms]

Yes vit B12 can mimic MS BUT but but usually the diagnostic evidence needed for a dx of RRMS wouldn't be there. Basic blood tests should have been done long ago, looking for indications of vitmin deficientcy when looking at sx, anemia, vit D, Vit B 12, peri-menapausal etc

Personally i take vit D and B12 and have been taking vitamins of some sort for donkeys years and neither of them or any other vitamin has done a thing to change this in me. Its probably a pet peeve for me because the dr that I saw since my late 20's only ever focused on circulation issues, then vit deficiencies, then hypoglycemia regardless of test results. I've literally been trying to fix a neurological condition with food and vitamins lol and trust me when i say, it didn't hurt but it didn't really help either.

Please please dont hold off starting treatment, by all means get a second opinion, thats not uncommon for people to do even after dx but dont stop or hold off starting your copaxone. Its very doubtfull that its B12 and not MS, its common during and after preganacy to have low vit levels, and for it to be B12 def causing brain lesions, your talking long term, really long term.

Cheers.............JJ  

[Sailorsong]

A lot of pwMS have low B-12 & D levels in their bodies. So far I have not read of an explanation of why this is that I can remember at least. Personally I think it may be due to the fact we have heat tolerance problems and as such don't get enough sunlight. And as Bubbles said low B12 will not cause a positive LP.

Dennis

[Red_Star]

Yes vitamin B12 deficiency is a MS mimic. I answered a question a while back and medhelp member katiebear051912 mentioned she was diagnosed with the most aggressive form of MS. She actually had vitamin B12 deficiency.

http://www.medhelp.org/posts/Rare-Diseases/Vitamin-B12-Deficiency/show/1655412

***

The underground classic that sparked a patients' rebellion and saved lives: "Could It Be B12?: An Epidemic of Misdiagnoses" by Sally M. Pacholok, R.N., B.S.N. and Jeffrey J. Stuart, D.O. Now revised, updated and expanded in a second edition.

[bubbles_04]

I went back over your posts and it seems you do have a pos LP. A B-12 deficiency will not cause a pos LP. It's possible to have both. Maybe talk to your Dr about it. Are you taking any supplements? I will be starting copaxone too soon and can do this together :)  

[bubbles_04]

Did you have the LP done? Was it pos? I don't think a B-12 deficiency would give you a pos LP... Where are your lesions? Just in your brain or spinal cord too?