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B12 level testing how do I know results are correct when I doubt them

Posted , 4 users are following.

terry62719
terry62719

My problem is that the neurologist that I trust and believe says my b12 levels are correct. But he maybe be wrong

Problem I have is that due to various reasons I'm sure my problems are due to degrading mylene sheath due to b12 deficiency. My nann ended up on tablets for nerve issues and my mum was diagnosed with TM 4 years before she died. Which if she had b12 Def then that would be a factor why she had TM. I believe I have a b12 problem maybe due to genetics. My mums doctors notes where destroyed about 1 year ago. Why is it in this country next of kin get asked about destroying some Ines medical notes. When in fact it's the genetically connected people i.e. Me my mums son. Who now could use the info in my mums notes to figure out a possible genetic problem. Especially that I have 4 children if my own. I have nerve problems in my spine that is causing muscle atrophy and muscle spasms and electrical shocks in my legs. Doctors say I've had some infection in my spine or something that has caused inflammation and my bodies immune system has been stacking the nerves now I'm on steroids to remove inflammation and just about to start some other tablets to calm my nerves down!! But I still believe I have a mylene sheath problem due to b12 deficiency there is a genetic problem where you can have only 1x PMPH22 gene when you should have 2 this leads to mylene sheath problems with my family history I believe this is a possibility but doctors don't seem to believe this as a possibility. I'm left in a quandary what next to do

1 like, 5 replies

5 Replies

  • clivealive
    clivealive terry62719

    Posted

    What country are you living in?

    Can you get hold of the results of your serum B12 and serum Folate tests together with the ranges <from - to> and post them on here?

    Were you supplementing with B12 before the tests were taken as this will "skew" the result and be of no use unless they came out very low?

    Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk.

    B12 deficiency may lead to sub acute degeneration of the spinal chord but you are probably aware of this.

    I am not a medically qualified person but one who gas had P.A. for 45 years.

    I wish you well. 

    • terry62719
      terry62719 clivealive

      Posted

      Hi Clive I live in Lincolnshire in the U.K. I will ask my doctors for the information you mention for sure

    • terry62719
      terry62719 clivealive

      Posted

      I definitely have something going on as in my notes from hull general it reads. -------

      Longstanding bilateral lumbar sacral plexopathy (right more than left)

      MRI shows that minor disc degeneration C5/6

      Short segmental syrinx between T10/T11 normal conus no evidence of spinal mass and normal volume CSF

      L5/S1 disc degeneration together with annual tear and central disc protrusion which abuts the theca and approaches S1 roots moderate facet joint degeneration well preserved paraspinal muscle bulk---------

      I have the actual MRI data on a disc I've purchased it from hull general but I need some software to read it allied pismo. Also on info from hospital reads

      Specimen cfs lumba puncture gram 1 no organisms seen

      Red cells 723 per cu mm

      leucocytes 1 per cu.mm

      Yet I have just noticed that on the discharge letter it reads CSF Mcs grew Neisseria elongate however this is thought to be a contaminant

      Now you know as much as I

      Your thoughts appreciated

      Regards Terry

  • marion29181
    marion29181 terry62719

    Posted

    Do you know what your B12, ferritin and folate levels are? We are entitled to have copies of our blood test results, although some surgeries will ask for some money to cover paper and printing costs. I would also suggest you have a look at the Pernicious Anaemia Society website where you can find a full symptom list. This can be useful as you can print it out and tick all that apply to you. I'm not a medical professional, just someone who was diagnosed with PA about three years ago. So I can't help you with the genetic information I'm afraid. 

    Unfortunately a lot of doctors are poorly informed about low B12, and don't realise how serious it can be when it is left untreated. Martin Hooper, the founder of the Pernicious Anaemia Society. Is a sufferer himself. He has written several books on the subject, and I think you may find reading one of those helpful. Best wishes Marion 

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