I am new to this forum and was feeling really good while reading your post. I was recently diagnosed with small fiber neuropathy which is progressing fairly rapidly. The pain is being controlled by Lyrica but I held little hope that it could ever reverse. Reading your post was giving me hope until I read that having Sjogren's seems to make you an exception. Can you explain why that is so? I know that the two can be linked but was not aware that it would impede my chances for a reversal of the damage. Any information would be helpful. Thanks.
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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01-28-2013, 05:24 PM
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