Quote:
Originally Posted by LizaJane
My neuropathy began in 1996. By 1999 I had two abnormal EMGs. I think had a bunch of other abnormals. I went to Mayo and had more abnormals.
Today I had an EMG as preparation for spinal surgery and the sensory nerves were normal. I haven't gotten the final report, but he neurologist who did the test said all nerves were normal, except my peroneal, which have never been normal. I do have a new L5 radiculopathy with denervation of the L5 muscles on the left, but it's not new enough to be causing my pain. (that's from the spine)
After seeing the results, one of the neuros said: That means the original diagnosis was wrong, and you never had neuropathy!
Yah, right. I told them I had learned how to care for it--the secret is feeding the mitochondria needed to grow axons (CoQ10, acetyl L carnitine) and taking antioxidants to keep inflammation from causing harm. In addition, keep using the muscles, whether you feel them or not. That was the secret I learned on this forum.
And really, my symptoms are so small compared to 10 years ago. Yes, they're not gone, but they are not that significant.
It can be done. If you've got an idiopathic small fiber neuropathy, or long fiber, and don't have an ongoing CIDP or Sjogren's picture, your peripheral nerves can heal.
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Seems I have been talking to the wrong people . My doctor is telling me that lyrica is the best he can come up with , along with 60 mgs of morphine 3 times a day . I have been led to believe that lyrica is the best there is out there that helps neuropathy . But I have to tell ya , I have had neuropathy from the knee down to my toes for 5 years now . When I lay down the pain worsens by 100 fold . As long as I fall asleep in the first 10 mins I lay down the pain doesnt bother me until the meds wear off and I start feeling the pain . Oh yeah I take amitriptylene for sleep. I have not been seeing a neurologist so this may not be a good mix of drugs to help my pain . But occasionally I am pain free with just the feeling I am walking on baloons(pretty much all the time) . But the pain meds dont last as long as they are supposed to . So to get around it I am supposed to take 300 mgs of lyrica twice a day and 60 mgs of extended release morphine a day , well to make it last and be more efficient I take 150mg of lyrica 3 xs a day and 30 mg of morphine 3 xs a day . This often times leaves me in pain but still I get more relief that way . Grouchyness is a huge problem for me because my wife works alot to pay the bills and my kids are all 17 and older and just dont hang out with me much . So much of the time I am alone and in pain . I guess besides the pain loneliness is my biggest problem . I know I am depressed but just dont want back on the brain drugs , they really make it worse for me . Onlly one of those that worked made me hateful and mean and that was Wellbutrin . I have heard there is a surgery called nerve decompression that can cure neuropathy but my doctor doesnt know anything about it . I have read that only 200 doctors in the U.S. know the procedure and it takes a couple of cuts in various places along the spine neck and feet . Back to the meds , I am almost certain that gabbapintin is part of the cause of my neuropathy . Long story behind that but just wanted to see if anyone else might have the same conclusions . I honestly think the doctors treat the symptom and not the disease these days . Thanks for letting me vent a little and thank you listening folks . It does help to talk to people who understand this nonstop pain we live with .
Grateful for the conversation the understanding
Dhreg