Yes. I have severely reduced nerve fiber density in the thigh and calf. But it was normal on the sample taken from the top of the feet. The diagnosis is non-length SFN. I have severe burning on both feet and up to the shin. Knee and around is fine. Then I have burning on thigh and butt (if I sit somewhere). My hands, body face are ok as of now. I could occasionally feel a little bit burning on the hand. But if I never had any problem in my feet and leg and thigh, I would never have noticed the burning in the hand (because it is insignificant so far). All my symptoms match the length dependent SFN. I think they diagnosed non-length dependent because of the normal fiber density reading on the sample from my feet.
I live with it because pain medications make me a zombie. If anyone out there with my symptoms and test result, please share your experience. I think SuzieCue biopsy results are similar to mine, though my calf has severely reduced never fiber density. However my feet has normal reading.
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Originally Posted by SuzieCue
Here we go. I'm in NYC. Neurologist suspected SFN and sent me for a skin biopsy via another doctor in his office. Came back positive, but showed reduced nerve fiber density in the thigh, not the ankle. My Neurologist put me on Neurontin and sent me back to my Internist for blood work. The Neurologist was tough to reach on the phone and didn't specialize in this illness. I found a 2nd Neurologist who did. He put me on Gralise which is Neurontin 1x a day vs 3x a day as I kept messing up on the exact timing dosage of the 3x a day Neurontin.
2nd MD also said he doubted whether I had SFN as the test results were so unusual. Note, my symptoms were burning pain, pins and needles of my back, lower legs, feet and hands. I never heard of this illness until I was told I had it. Looked it up and seems the 1st MD was spot on. I also responded fairly well to the medicine. I had a return appointment and again 2nd MD said he doubted whether I had it due to test results. I want to kill this Neurologist. Then I re-read the lab results which said the test was taken rt thigh and rt calf. Test was taken right thigh and right ankle. I didn't tell the MD this. Obviously my test results are messed up, but that has nothing to do with the fact that I have the symptoms I have. So has anyone had 1) test results showing reduced nerve fiber in the thigh and/or 2) a bad experience with a so called expert in this field? Please help
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