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John, Volunteer Mentor (@johnbishop)

Member Neuropathy Journey Stories: What's Yours?

Neuropathy | Last Active: Sep 28 8:22pm | Replies (370)

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As if my story wasn't long enough…I wish to add, for anyone who may be in early stages of neuropathy troubleshooting.

I had a negative EMG/Nerve Conduction Study in 2017 and not diagnosed with SFN until 2019. As I learned that Small Fiber Neuropathy is NOT shown in this test, only Large Fiber Neuropathy, I wondered why noone thought to line me up with a skin biopsy earlier to rule out SFN, given my symptoms of nerve dysfunction and not proving Large Fiber through the test.

In retrospect, I do understand that SFN is still very unknown and misunderstood. I will take some of the blame (it's not all on Drs) for not pushing and learning enough during that time. Such foreign territory, especially when you are overwhelmed by pain.

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Replies to "As if my story wasn't long enough...I wish to add, for anyone who may be in..."

@rwinney Hi, Rachel. My neuro doc did not want to bother me with a small fiber test, because he said the treatment would be the same, whether I had a diagnosis or not. He said some people are not nuts about getting the little samples taken from their skin. It hurts, I guess. I insisted on the test, and my test for small fiber did not come out positive. Only my large fiber did. Who knows. There is no good treatment for this goofy, painful illness, anyway…..Love you, Rachel, and thanks for the sweet compliments to me. Yes, maybe check out CRPS when you go to Mayo. Have you done any mirror imaging techniques? Why I ask, is that they are done successfully, sometimes for CRPS. Always thinking. Sometimes I wish I could just stop already, and just drink a damn beer…… Love, Lori

in reply to rwinney, I have the same frustration. I have all the symptoms of sfn and one doctor said that is what it is, but no one seems to feel I should have the skin biopsy. Who did it for you? I also have 100% of the symptoms of polymyalgia rheumatica, but still don't know who to take care of me. My primary doctor is sending me to a rheumatologist in early June, but I went to one two years ago and she told me she didn't know what to do for me except to prescribe Lyrica which put into the ER. My question: is this the right specialist to see, i.e., a rheumatologist?