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Old 10-30-2013, 03:47 PM
Susanne C. Susanne C. is offline
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Join Date: Jul 2011
Location: Mid-Atlantic coast
Posts: 721
10 yr Member
Susanne C. Susanne C. is offline
Member
 
Join Date: Jul 2011
Location: Mid-Atlantic coast
Posts: 721
10 yr Member
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I didn't reply at first because you said it didn't run in your family, my experience is with hereditary neuropathy, but since you are looking for more comments, I will contribute my experience.
Hereditary neuropathies can appear as spontaneous mutations, also some people develop symptoms only when much older, which may lead them to believe it is something else, so it can be in your family without being identified. . You can develop quite serious symptoms with CMT at any age. I was clumsy and uncoordinated as a child, with restless legs, numbness set in in my 30's, pain increasing severe through my 40's. my neurologist thought I was too young for the severity of symptoms I had and sent me to Johns Hopkins for a second opinion, EMG/ NCS showed severe large fiber with muscle deterioration, skin biopsy devoid of nerve fibers at ankle, reduced above knee, and deteriorating at upper thigh. That was several years ago and I was sent away for pain management as it will progress and there is no treatment. The neurologists were done with me.
I do have bilateral severe carpal tunnel, and my hands are numb for several hours when I wake up, I cannot hold a needle or pen until around ten. The burning comes and goes for me now, but I am on Gabapentin and MS Contin, so my pain is greatly reduced from where it was. My upper thighs are where the burning is most noticeable, but my legs are almost completely numb to that point.

It does sound as if you have some autonomic issues, but hereditary neuropathy while primarily sensory/motor can involve almost anything as it progresses.

Please do not allow anyone to convince you that this is all in your head, or spiritual. Do you recall Jesus ever telling someone he healed that it was all in their head? Honestly I do not know where these people come from. PN is a very idiosyncratic disease and the reason you are not getting more answers is probably because we all have slightly different symptoms, but you certainly do have company here.
Unfortunately, while there can be improvement with some cases making lifestyle changes and using supplements, it is not often a curable disease, unless you have a specific cause- toxicity, nerve entrapment, etc.
Susanne C. is offline  
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lined_in_silver (10-30-2013), Sham (11-26-2013)