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Replies to "Glad you have a specific diagnosis. I have exactly the same. I tend to go through..."
My neurologist (3 hours away) referred me to neuromuscular specialist, who is not taking patients. I called central scheduling and was offered March 7 appointment. I asked if I could be put on cancellation lists for the 2 neuromuscular specialists (apparently that's all there are now in all of UPMC network, which is vast). So, maybe I will know in 48 hours if I can get on a list.
Meanwhile, my neuropathy has spread to include most of my body. Very tight feeling in legs and arms. I am getting that sensation of ants crawling on my face sometimes as well. It makes me very anxious that I can do nothing to stop it or to find out the cause. I printed the list of tests Dr. Oaklander suggests for finding cause of SFN, and I've had many blood tests already. I don't know if my Lyme tests are Western Blot, it doesn't say that.
I appreciate everything you are telling me! I actually have been doing what you're advising! Reading articles from NIH and skimming lots of others. I suspected I had SFN months ago, but my neurologist really thought I had central sensitization syndrome. It made me doubt myself. I will never do that again. The rheumatologist that I saw at the end of August for the first time is
the one who ordered the biopsy. I see him in 2 weeks and hope he can run a few more tests. My sister has restless leg syndrome and some neuropathy in her feet.