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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LIZAJANE Where are these stickies you speak of? Really interested in your self Tx. I was Dx in 2010 with skin biopsy, with small fiber Neuropathy, but the Neurologist reallyt didn't talk about it "I just had it" She failed to explain. The symptoms started on my thighs (which is unusual), and is now raising havic to my calves/feet. I just went to my VA doc, another knowledgable, arrogant, piece of work . Asking questions about my symptoms, and possiblity of having MS (symptoms are simuilar); "NO - YOU HAVE PERIPHERAL NEURITIS - YOU DO NOT HAVE MS!" Ok Doc, you made your point - So what else do I need to know, or expect, or manage it? [Nothing replied- just disturbed over the fact that I was concerned over having MS. I'm always reading material on specific Dx's, and unfortunatley, I see too many similarities with what I'm experiencing - I see no problem asking a doc about possibilities. She didn't have to have a cow. I felt I was waisting her time with my concerns. So much for the VA. Some Docs just don't have bedside manners. By the way, did you experience fasiciulations at all - mine are in my calves - feels like worms moving around - looks like it too , the muscles just quiver relentlessly. Anyhow, I would like to know more about your self healing - stickies. How do I get to them? JW