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Length dependent SFN

Neuropathy | Last Active: Oct 28 8:33am | Replies (12)

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@julbpat

Glad you have a specific diagnosis. I have exactly the same. I tend to go through periods of not commenting on the Forum, because I hate to give endless negative advice. My first symptoms, pain in my feet, started 9 years ago. It took seven more years to get the correct diagnosis of SFN. So you are way ahead of the game.
One thing I feel confident saying - you will be better at putting this puzzle together than any physician. I try to gather all the facts, then talk to the doctor who helps me the most - at UAB, two hours away. I use my local neurologist for prescriptions and physical therapy referrals, local imaging orders, etc. I realize that he is never going to put the puzzle pieces together.
Even though your symptoms came on suddenly, and may indeed be related to the medication, I encourage you to think long and hard about the past ten years or so. Any odd medical things? Any unexplained pain, like muscle soreness that was excessive related to your activity? This will help you decide if the medication was truly the cause, or maybe just a coincidence.
Also start using Google to read research articles. I tend to find articles from NIH. I don’t try to understand all of the research, but just see if anything jumps out at me. Again, no one else is going to do thorough research for you. But they might appreciate a legit research article that you have found.
My SFN is idiopathic. My sister and I both have the same symptoms, although mine is worse. She has not been to a doctor about it, or had testing. Genetic screening at Hudson Alpha, which is here in Huntsville, was negative. I continue to get worse.
Whew, that’s all for now!

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Replies to "Glad you have a specific diagnosis. I have exactly the same. I tend to go through..."

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.

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.