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Familial, non-amyloid peripheral neuropathy

  I was diagnosed several years ago with a familial neuropathy, confirmed by biopsy and EMG, as well as CT scan.  Very little information on the prognosis of the dx other that it probably was genetically passed to me (two brothers and a sister) by our mother.  Evidently unique to family groups.  We are all experiencing various disabilities with some interesting pathologies that seem unrelated (Asthma / COPD, rather protuberant abdomen, but generally very thin otherwise, dizziness and difficulty with walking and balance?  Are they all related to the Dx? There is also generalized weakness and often extreme weakness after only limited exertion?  We are aw3are there is no cure, but asking questions about whether walking or exercise helps or hurts?, dietary adjustments that might help (most of us take some b complex and E)  Should other considerations like caffeine intake be avoided.  What is pronosis for continued ability to walk, drive or effect on autonomic functions (bowel/bladder/breathing etc)  Thank you
There are a variety of inherited neuropathies, and I don't have enough information to be able to correlate your other symptoms to the neuropathy. Certainly, inherited syndromes such as neuropathy can be associated with other systemic problems (such as liver, lung, heart, etc). But each inherited syndrome is different, presumably because the gene(s) are different. I'll remind you that neuropathy occurs in hundreds of different diseases including hereditary and not. Autonomic neuropathy is just a subset of neuropathies in general.
In general, exercise shouldn't hurt. Diet: it doesn't hurt to take B-complex vitamins, even if it isn't certain to help. A modest dose of vitamin E is probably just fine, but watch out not to overdo any of the fat-soluble vitamins (A, D, E, K). Caffeine? Don't know, wouldn't guess it could make much difference (if you have a tremor, it might get worse with excess caffeine, easy enough to test).
Your questions are very good ones. I would consult an experienced neuromuscular specialist. There are several excellent centers around the country. Certainly, you are welcome to call 800 223-2273 and ask for neurology appointments at 4-5559 if you wish to be evaluated at CCF. If travel here is impractical, look up the nearest major university medical center and call their neurology department and ask if they have a neuromuscular specialist.
I hope this helps. CCF MD mdf

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