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Neuropathy: Numbness only, no pain

Neuropathy | Last Active: May 27 4:47pm | Replies (504)

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@johnbishop

@kwfinnie - Should I be diagnosed by seeing a neurologist is a tough question for me and one I think you have to make for yourself based on your other symptoms and how the numbness is progressing. I put it off for over 20 years because I just had the numbness which was in the toes. It gradually progressed to the rest of the foot and then started up the legs to just below the knee. I discussed the numbness with my Mayo primary care doctor at the beginning of the symptoms in the toes and was told they can do some tests to determine if I have nerve damage. My next logical to me question for the doc was if it is nerve damage what is the treatment - no answer then and when I finally decided I needed a diagnosis I got the referral to a neurologist. Then was totally bummed out after being diagnosed with idiopathic small fiber peripheral neuropathy and was told the same thing by the neurologist - there is no treatment for numbness. Fast forward to 2016 and looking for support and information I found Mayo Clinic Connect which got me started doing my own research and learning as much as I can about my neuropathy.

I guess if I was in your shoes I would still want to know for sure about what is causing the neuropathy and if there are any treatments that might help. My suggestion would be to learn as much as you can about your symptoms so that hopefully you will find a treatment that helps reduce or eliminate the symptoms. My two favorite learning sites:
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/

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Replies to "@kwfinnie - Should I be diagnosed by seeing a neurologist is a tough question for me..."

I went down the same path and the answer I got was they need to do a nerve biopsy to discern the "reason" for the neuropathy. I already knew that mine was from trauma from air bags. I was bummed after going through the testing and she said "you have peripheral neuropathy" ... well no s***! If they do a biopsy, those nerves in that area will NEVER renew. No thanks.

Thank you for your comments. I very much appreciated your discussion of what have endured. I do want a response from neurologist but I have yet to find one who is accepting new patients and who knows a lot about PN and myelin sheath regeneration. Are folks who work on the question of regeneration? With all the press about stem Cells I would have thought we would see some press for applying it with myelin sheath regeneration. Best Wishes. K