B12 as an MS mimic

[steph74]

Hi Everyone,

I wanted to get anyone's thoughts or input on B12 as an MS mimic and how likely it is in my case.  Bear with me as this post might be a little long, because some background is probably in order.

First off, I do have celiac disease, dx 1/08 and I've been on a gluten free diet since then.  I finally got that dx due to pretty bad iron deficient anemia (my ferritin level was 1!)  (After years of being severely anemic when pg, despite taking large supplements of iron, it was finally investigated when I started having cardiac sx due to anemia when not pg.)

I started having neuro sx 7 years ago, after the birth of my second child (and yes, I was horribly anemic durring that pg).  MS was not "ruled out" but was not ruled in due to no lesions (brain or spine) and neg LP.  Sx at that time were primarily sensory, with hyper reflexes on left leg.  Since things weren't getting worse I abandoned the quest for a dx at that time.

I had a few other random sx over the years but didn't really think of them as neurological at the time.  In early February of this year, neuro sx returned worse than ever, with new ones appearing every week or two.  (Trigeminal neuralgia, starting on left side, eventually bilateral; severe headache; incoordination with left hand; cognitive issues--judging distances, remembering words and names, difficulty with simple math (big wake-up when I had a lot of trouble subtracting two 4 didget numbers on paper!!  I'm an economist with a PhD, so I should be able to do that!); bad fatigue.)  

When I saw the MS specialist a few weeks ago she noticed signs in my pons, cerebellum, and c-spine.  Definitely more hyper reflexes, mild ataxia, loss of sensation in my left foot, can't tell whether my left big toe is up or down. I'm forgetting the others...  :-)  She wants me to see a neuro-physychologist (on 5/11) and a neuro-surgeon to rule out cascular causes of the TN.  No dx because MRIs are negative (most recent brain MRI was ordered by a NP due to the severe headache and was not done withthe MS protocol in mind--slices were 10 mm, on a T1.5 machine).  MS dr will repeat MRIs next year on a better mahcine with stronger magnet.  She also ordered the usual bloodwork.

So the bloodwork came back and her office said everything was fine and mailed me a copy of the report.  So here's where B12 comes in.  My B12 level was 300 ("normal" range is 200-1100) but the lab noted that 10-15% of people will have neurological problems in the range of 200-400.  So I started looking up B12 sx and while some are similar, the main difference is that B12 usually produces symmetric sx (mine are definitely not symmetric).  Also, I definitely do NOT have B12 deficient anemia (my hemoglobin was as high as I've EVER seen it at 14.5! :-) and the size, shape, etc. of my RBCs was all in the perfectly normal range.  Also, it sounds like B12 deficiency would also produce visible lesions on an MRI, as it does cause demyelinization.

So I'm thinking no matter what I'll start supplementing with B12 (I don't think it's going to hurt and it could help).  But my question to all of you is, should I pursue this as a possible cause of my sx, and if so, how, other than supplementing with B12?  Also, if you do know anything about B12 deficiency, do you think my sx sound like this could be the cause?  Should I email my neuro to follow up on this?  I want to be open to any possibility (I want to find and treat what's really wrong with me).

Thanks!

Stephanie

[essdipity]

From what you write, I wouldn't guess that B12 deficiency is what's going on with you. Although some of your symptoms can certainly be seen with low B12, not all can by a long shot. And your level isn't low, actually.

I strongly doubt if low B12 can result in relapses and remissions, and I haven't heard of it implicated in TN. Still, it wouldn't hurt to check further. Have you had a Schilling test? Also, look up Pernicious Anemia, just to cover all the bases. If you do B12 supplements, do it by injection. That's the only really effective way.

At the same time, as you well know, you'll have trouble getting a diagnosis of MS with clear MRIs.

Good luck to you.

ess

[steph74]

Thanks for your feedback on the sx and whether they could be related to B12.  Like MS (and many other diseases) if you look up sx on the internet you'll find everything under the sun as a possible sx.  :-)

I'm pretty sure I don't have pernicious anemia due to lack of intrinsic factor.  My guess is that if I have a B12 deficiency, it's residual from the malabsorption from the celiac disease.  I know my intestine is healing since being on the GF diet, since I don't seem to be having lactose intollerance anymore and my iron stores are going up, up, up!   (Yeah, can you tell this makes me happy?)  But it's possible the B12 is taking longer.  But I think I should be able to absorb it now, if it was from the celiac.  

Should I ask my neuro about B12 injections or would I have to see another dr for this?  I hate to run around to 80 different drs...

Stephanie

[opie74]

I was found to have low b-12, 310, by the same doc who Dx me with MS.  I take B-12 injections in adition to the DMD.  B-12 should not cause many lesions.  It does not rule out MS.  Your count would have to be lower for a long time for it to truly mimic MS.

Hope this helps.
Ann

[CheeserNurse]

Our stories are VERY similar. I originally was diagnosed with a Vitamin b12 deficiency - I have small lesions throughout my brain, some bigger than others, but once i started the supplements, the symptoms seemed to 'disappear' then I had them come back in full force about a few months after I started taking the supplements, and now am being referred to a 2nd neuro. Message me via this site and I will share with you my story. My first neuro told me it 'can' mimic MS symptoms, but i keep getting my levels tested, and they're normal, so clearly, it's not b12 causing me problems now.

Best wishes,
Aleah

[shoshin]

I think I have read that B12 deficiency or low B12 is not uncommon in people with MS so the two things aren't necessarily mutually exclusive. For example,

"Multiple Sclerosis (MS) and vitamin B12 deficiency share common inflammatory and neurodegenerative pathophysiological characteristics. Due to similarities in the clinical presentations and MRI findings, the differential diagnosis between vitamin B12 deficiency and MS may be difficult. Additionally, low or decreased levels of vitamin B12 have been demonstrated in MS patients." (http://www.ncbi.nlm.nih.gov/pubmed/15896807)

Here's another link that talks about MS and B12:
http://ms.about.com/od/livingwellwithms/a/vitamin_b12.htm

The other thing you might look into is having your methylmalonic acid and homocysteine levels tested. They're supposed to be more sensitive tests for B12 deficiency and can show deficiency even if your B12 levels are in the normal range. See http://www.aafp.org/afp/20030301/979.html

sho

[steph74]

Thanks everyone, for your feedback.  I think I will ask my neuro about further testing.  The only thing I'm not sure of, is whether to take B12 supplements in the meantime.  I've read that almost as soon as you start supplementing, your serum B12 levels will go up, although you may not have fixed the underlying problem.  Will these other tests (methylmalonic acid and homocysteine) be accurate if I'm taking supplements?

Thanks for taking the time to read my long post and answer my questions.

Stephanie

[summerluvr]

My b12 level was 230 a few years ago and I did shots for a while.  I was told it was low but still within "normal" range?  The first shot made me feel so great, it was crazy.  I am now trying to maintian my level.  I have gastro issues  and the low b12 is most likely because of this.

the low b12 was giving more of the anemia type symptoms (dizziness, weakness, heart palpitations) that improved when I got my level up.

[PastorDan]

Multiple friends suggested I get tested for B12, and when I did, i fell smack dab in the middle of the "normal" range.

[deborah0904]

I just found out my B-12 is low.  I've been taking B-12 for some time now however; it has not helped.  I more than likely will have to begin injections.  I am wondering how my leg weakness/spasticity/nerve sensations will respond.  It will be interesting to see.