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Frustration with Idiopathic Neuropathy

Posted , 3 users are following.

rocco68450
rocco68450

I am 18, I have had tremors since I was young, This progressed to numbness and tingling in my feet and hands, Eventually I had Spasms all over my body mostly my calves, Sometimes the muscles inbetween my ribs even this was so painful it would be hard to breathe or move. Last year I had a NCS that showed axonal damage with a conduction block. Since then I've had so many genetic tests and all have come up negative, They even did a full genome sequence and found pretty much nothing other then I am a carrier for a few conditions. They told me though they would call me in a year or two when they may have more genetic tests. I am just wondering is there any condition that affects children that causes Neuropathy that doesn't have a genetic link?

0 likes, 3 replies

3 Replies

  • kennyatw
    kennyatw rocco68450

    Posted

    I have had it for 2 years as a side effect from taking harvoni for hep c and it sucks! I know i would have never taken it if i would have known i would have gotten this. But you can get neuropathy from almost anything, from drug side effects, accidents to it being hereditary. What sucks is there is no cure for it, sometimes it goes away on it's own but most of the time it doesn't. I have it in my feet and somedays i wish someone would cut them off. All the medications they have tried on me have not worked.  I am currently on gabapentin, baclofen and tegretol but I don't even get a buzz off from them. I don't know if you have a marijuana dispensary where you live but i get CBD oil there and that seems to help a little. Good luck with it and let me know how you are doing with it. Oh and doctors love to prescribe anti depressants like lyrica or cymbalta, don't take those as they can only make pain worse, it did for other people i know on here and on facebook

  • craig_65142
    craig_65142 rocco68450

    Posted

    Hi rocco68450
    • craig_65142
      craig_65142

      Posted

      Hi rocco68450 reading your story is very interesting to me as your symptoms are exactly the same as mine please message me to discuss further
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