U.S. doctors who specialize in b12 deficiency?

Are there any doctors in the U.S. who specialize in b12 deficiency? I'm a middle-aged woman who had previously been in excellent health, and have a rather complicated case. Last July, I began to have occasional numbness in my arms and legs. In August, I had a couple of nights of terrifying electrical charges going through my body, which finally sent me to the doctor. I was diagnosed with low b12, but because I'd been taking 5,000 b12 pills/day for a couple of weeks, it was just barely low. (I figured I had b12 deficiency, because I was diagnosed with it seven years ago, took the typical series of daily injections for a week, and made an easy, full recovery.)

Since the terrible nights in August, I've had daily and nightly (though not constant) numbness in my arms and legs. I'm currently waiting for DNA test results, and I've had dozens of other medical tests (tons of blood draws, several MRI's, multiple nerve tests, skin biopsies, etc) which have all shown good results, and have taken daily hydroxocobalamin shots for months (I shot 1,000/day intramuscularly for 3 months, and now do 500/day subcutaneously.) I've tried several times to taper off the injections, but my symptoms always quickly worsen.

I've seen some improvement in the daily (though not constant) numbness in my hands and legs, but my improvement seems to be plateauing. I also have an occasional second or two of dizziness a couple of times a month, and feel a rapid thumping in my chest occasionally at night, even though my pulse rate is good. Aside from these symptoms, I feel fine most of the time.

I'm in the NYC metro area, and have gone to a couple of neurologists, including one at the Columbia Neurological Institute in NYC, but they know less about b12 deficiency than I do (I've done a lot of research, have read the great book "Could it B12", visited lots of websites, etc.) Unfortunately, Columbia doesn't have any b12 experts on staff. I'm really hoping someone here can point me to a doctor in the U.S. who specializes in b12 deficiency...

Thanks so much to everyone in this wonderfully helpful group. I really appreciate your time and concern.

3 Replies

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  • If you did not know the reason for your original B12 defeciency then , presumably, it still exists and will always do so. Hence the need for permanent treatment. B12 needs supporting assistance such as other B's , Magnesium and particularly D; all of which need their own supporting vitamins. The other great possibility ; Is your system able to process all the normal good foods. You could try an elimination process of the usual suspects, such as, gluten dairys, sugars etc. You may need to refer to the Functionalist Doctors/medicos. I think there is a list on Dr Datis Kharrazian site.

  • Hi jde2004ss. Just a thought...have you had your folate levels tested? B13 and folate work together so if your folate levels are low your body won't be able to utilize B12 properly. Medic's often think that being at the low end of the range is okay - it's not. Ideally levels are best if in the top third of whatever the reference range is. And low folate can give similar symptoms to those of B12 deficency.

    It's really good to hear that you have seen improvement in your symptoms. Please don't get downhearted if everything isn't fixed straight away. Recovery rate is very much an individual thing and we do hear of people who are still improving several years after treatment has commenced.

    The important thing is to keep getting enough B12. Stichting B12 Tekort - safety of B12 (in the PAS pinned posts - to the right of this page when you log on) points to the safety of B12 and the potential requirement for every other day injections for up to two years. And we have forum members who inject every day - and have done for longer than two years - as it's the only way for them to remain well and keep symptoms at bay.

    So please don't try to taper off your injections too soon...you cannot harm yourself or have too much B12. Let your symptoms be the guide...if you still have symptoms (particularly neurological ones) that's a sign that you need to keep up with the B12 - until you're absolutely sure that no further improvement is occuring. If symptoms return when you try to cut down - increase the frequency again.

    We have quite a few members in the USA so hopefully one of them will see your post when they pop in and be able to offer some useful a suggestions.

    In the meantime, take care and please post again if you need any help...or perhaps some friendly ears or kindly words 😀

  • Hi,

    Thought this book by USA authors might be helpful.

    "Could it be b12" by Sally Pacholok and JJ. Stuart

    The authors also have a b12 deficiency website

    b12awareness.org/

    PAS (Pernicious Anaemia Society) local groups

    As far as I know there are two local PAS groups in USA. perhaps one of them may be able to help?

    pernicious-anaemia-society....

    Contact details of these groups are available to members of the PAS.

    pernicious-anaemia-society....

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