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
Quote:
Originally Posted by cat921
I think you may have found another family with genetic beriberi--mine.
My toes started the pins-'n-needles thing, got worse...
results of tests: "peripheral neuropathy of moderate severity"
not MS (sister has); not ALS, ...
so I'm part of the 30% with idiopathic neuropathy
B6 level fine, B12 high, B1 not detectable!
Might explain my mother having increasingly weak legs--and me, too.
Father had an enlarged heart (another symptom)--and me, too.
Inherited from both??? or merely coincidence.
Father did have a severe tremor and, wow, do I have an intentional tremor--
but that's not part of not absorbing thiamine.
Anyway, if you want to talk..
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