Quote:
Originally Posted by josephbcostello
I believe that my brother and I and our cousin have genetic beri beri. After all of us have spent months and months with doctors looking at MS, tumors, neurotransmitter disease, etc., etc., there has been no diagnosis or help. I have now had two blood tests that show no B1 in my body. Still the doctors don't know exactly what to do with it. I am trying to find a doctor that is familiar with this condition and more equiped to help.
Can any of you point me in the right direction? We are all tired of feeling so bad and being made to think that we are crazy.
joe
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Have you and your family had any relief? Did you get B1 injections?
I too have low B1 levels and peripheral neuropathy symptoms (burning and piercing pains) for the last five months. Last month my blood B1 level was about 10% below the reference range which is not too unusual. However, at the time I was taking large amounts of benfotamine (500 mg) and regular B1 (~300mg). I would expect it should have been elevated or at least midrange.
I have been off of all supplements for three weeks an have just been retested but do not have the results yet. BTW, the symptoms have really gotten worse in the last week.
I wish you improved health.