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Originally Posted by Susanne C.
It is interesting that he said you don't get large fiber involvement until later in the game with hereditary neuropathy. I waited a very long time to see a neurologist, at least 15 years after the numbness started in my early 30's. By then my NCS was abnormal. My skin biopsy showed no discernible nerve fibers so it was pretty far gone.
I had no idea that all this was connected with my childhood coordination problems, as there was no access to family history.
It sounds like you have found a good neurologist. As I recall a lot of your symptoms fit with CMT.
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He said in a few cases of hereditary sensory neuropathy, my dad didn't have large fiber involment until he was in his 60's. I have excellent balance, so that kind cancelled out the CMT Dx, but the other symptoms are there, high arches, and calf cramping. This has been a 30+ years with PN pain, so it is progressing slowly, what ever the type. Interesting there are only two families to date, that had a hereditary sensory neuropathy and had burning feet, as the main symptom, maybe there is one more family? As far as childhood coordination problems, they usually picked the fat kid before me when we were choosing teams for baseball... Part of the problem was there wasn't enough lefty mitts, but I think it was a coordination problem.