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MS or B12 deficiency?

Posted , 7 users are following.

a36821
a36821

For some time now I have been experiencing many different symptoms such as burning in feet when standing or walking, vibrations in feet, muscle twitching, burning in eyes (no eye sight disturbances) and generally muscle aches/pains (back pain, shoulder pain). I went to see a neurologist and after doing a detailed neurological exam he wrote blood test for ESR, anti dsDNA, CRP, ANA (basically a panel to check for autoimmune diseases) after all the results came back negative he said neurologically you are perfect and you do not need further neurological exmination. (I had asked him about if he suspects MS based on my symptoms but he said No, based on how I did in my neurological exam.

Two weeks later I went to a different neurologist and he did neurological exam (not as detailed as with the 1st neurologist) and said that he would like to check for B12, lyme, TSH, and heavy metal screen. Along with brain MRI without dye as a precaution. MRI came back negative, and lyme, TSH, and heavy metal came back negative as well. Only thing that came up was low vitamin B12 (serum levels) of 203pg/mL. I asked him if he thinks my symptoms are because of low vitamin B12 and not anything else and he said he is positive its beasuse of B12 and will administor B12 injections along with oral supplemens. I asked him if he think spinal cord MRI should be done to rule out anything else and he said there is no need for spinal MRI as Brain MRI is negative and vitamin B12 is low.

One note- Back in 2011 I was diagnosed with DDD and L5-S1 bulging disk.

I just wanted to get feedback from some members here as to what they think, do you agree with my neurologist that its B12? Any feedback will be appreciated. Thank you.  

0 likes, 10 replies

10 Replies

  • Guest
    Guest a36821

    Posted

    Hi a36821, from what I understand, 203 pg/ml isn't a low B12 level. It's not very high, and perhaps you'd benefit from it being higher, but I don't believe that's the cause of your peripheral neuropathy symptoms (burning pain in feet, vibrations, fasciculations, body pains, etc). Are you vegan? B12 is found in animal products, and most vegans take a supplement. Another reason B12 can go low is problems digesting and absorbing it - do you have any gut problems, like IBS symptoms (cramping, diarrhea, bloating, or constipation)?

    MS is only one cause of symptoms like you're having. Some others have already been ruled out, like Lyme and heavy metals. Hep is another infection that can cause the symptoms, as is Epstein Barr. Pinched nerves in the spine is another - maybe that should be investigated a little more? Another is diabetes or pre-diabetes, so have your triglycerides, cholesterols, fasting & loading blood sugar levels, and HbA1c been done?

    Also, consider Fibromyalgia, especially if you have a history of stress or trauma, gut issues, or any autoimmune conditions in your family. It would account for your unexplained body pains, and at least half of all patients with Fibromyalgia also have peripheral neuropathy symptoms (like the burning pain in your feet).

    To me, it doesn't really sound like MS, but if you're intent on continuing to look for it, the next step would probably to puncture your spine and withdrawl spinal fluid for testing. I would probably go other routes first, but of course it's totally up to you and your own research/decisions.

    • a36821
      a36821 Guest

      Posted

      Hello, Thank you for your reply. I don't have diabetes or any known viral infections. I am vegetarian and that explains the low b12. Also like I mentioned I do have DDD in lower back (only lower back was looked at in MRI) and bulging disk.

    • Guest
      Guest a36821

      Posted

      So I think a daily B complex vitamin (with at least 100mcg of B12 in it) is a good supplement to your diet, and you should further investigate Fibromyalgia and the possibility that a bulging disc is pressing on a nerve.
  • aggie28088
    aggie28088 a36821

    Posted

    Hello- are either of the neurologists that you have seen a Ms specialist? I would really seek out a neurologist who specializes in Ms if at all possible. I am in a similar situation to you... I have lots of MS symptoms but a clear brain scan. However- I sought out a neurologist who specializes in MS and she tested me for everything under the sun and does suspect MS. My vitamin B12 levels were in the 300s- and she considered that low! She put me on B12 injections and that has helped a lot with my energy level and mental clarity. Also have you had your vitamin D levels tested? Vitamin D levels often are very low and people with MS.

    I am very surprised that neither neurologist ordered a MRI for your spine. If I were you I would seek out a neurologist who specializes in multiple sclerosis and request an MRI in your cervical and thoracic spine. Keep being proactive and good luck!

    • a36821
      a36821 aggie28088

      Posted

      Hello, Thank you for your reply. Actually both neurologist I saw are specialist in "Neuro immunology and MS" according to American Academy of Neurology website.

    • kate85294
      kate85294 aggie28088

      Posted

      Hi Aggie

      I have a question for you. I had a brain MRI recently that showed several white spots on both of my frontal lobs. The radiologyist listed several conditions that could be related from possible demyelinating to blood flow problem. For this reason I saw six diffrent neurologists that the last two ones were at Stanford clinics. None could tell me why and how I've got those spots but all six doctors said I don't have MS. I brought up all my questions to those Stanford doctors but they dismise all of them. Questions like what if I had mini strokes, blood flow problem or GCA and they said nope. I've mentioned the readiologyst's report and they told me he had to report everything but he doesn't see you to diagnose you. The Stanford dr checked all my nevers function in more detail than the other doctors but they didn't ask for spinal tap or any other brain MRI. They told me that the white spots are bening and I should not worry about them since they see many cases like this. They told me since the brain MRI is not one of the regular check ups so not everyone knows if they have white spots or not. But if it was a regular exam then there would be many that would have them.

      So they sent me home by that. But i can not stop worrying specially when I search about the brain white spots on google . I can not find anything good about them.

      Do you have any opinion or anyone here that had the same results. If yes what did your neurologist tell you?

      Thank you

    • aggie28088
      aggie28088 kate85294

      Posted

      Hi Kate,

      I am fortunate to have found a neuro who specalizes in MS---and when I say that--I mean she REALLY specializes in it (I think many neuros have it listed that they specialize in treating it--but they aren't actively educating themselves on the new developments in diagnostics and treatment.  MS is a very tricky disease, and in some cases, there may be lesions that aren't yet visible on an MRI.  Also- remember that some MS patients present with clean MRI scans, but lesions are found in the cervical or thoratic spine.  Have you gotten spinal MRIs?   DO you have symptoms of MS?  Unfortunately, I can't offer an opinion on your brain MRI--but if you had multiple neuro look at it and they ruled out MS (and if you're not presenting with MS symptoms)  I would trust thier opinions.  What are your symptoms?  And have they ruled out other things (Lyme's and other auto-immune disorders?)

       

    • steven12310
      steven12310 aggie28088

      Posted

      Your absolutely right aggie, thats why it took 5 years to get my dx of PPMS
  • steven12310
    steven12310 a36821

    Posted

    B12 can have some major effects similar to your symptoms but also consider vit D3 and Omega 3 fish oils. It took me 14 MRIs and 4 spinal taps before I got dx with MS and you should have had a full spinal and brain MRI and a spinal tap at the same time to fully rule out MS. it is easy to miss the microscopic bits in the spinal fluid especially if you had a cold just before the test. Certainly the trapped nerves could also account for all the problems so you need to get a spinal specialist to check that out.
  • helen44371
    helen44371 a36821

    Posted

    Hi, I have had a similar experience in Australia. Four years ago, I had extreme symptoms and was found to have critical B 12 levels. This is my understanding -Be aware 200 is not considered low in Australia or Britain, but is not a true indicator as it contains both active and inactive (useless) b12. Need an active B12 test and if I below 30 will need weekly B12 injections usually over a 6 week period then transitioning to monthly, quarterly. My issues started in 2012 and my last B12 shot was in November 2015. However my initial doctor was going with MS and was not keen to follow the b12 protocol. However I was adamant that if I had that level of B12 deficiency, then I needed to treat it. My cognitive issues were significant & I was put on my first ever performance management plan at work, I changed doctors and completed the b12 protocol. I improved greatly, both overall wellbeing and ability to work well.However over time began to have gait issues, and also back and joint pain associated with arthritis (I am now 52yrs). I wasn't really getting any recognition if the isssues from my doctor, so although doing physio and bringing up the issues no further treatment or progress to determine underlying causes. I have developed tremors,and struggle to move my right arm for typing and mouse use. I use my left arm to overcompensate, so I can still function at work, albeit not as well. However at last I got to see the rhumatologist who immediately referred me back to the nurologist for reassessment as I significantly failed the knee jerk test and she wants to eliminate MS.  

    I would recommend you definitely follow up on the b12, it made my life liveable again, but be aware there could be more to it. Best of luck. Helen.

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