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Idiopathic Small Fiber Neuropathy Research
This coming June, I will make a journey to the Mayo Clinic in Rochester, Minnesota seeking answers to my diagnosis of idiopathic small fiber neuropathy. This will be my last major effort in getting some kind of relief. I was diagnosed about 5 years ago (skin biopsy) and have tried gaba, Lyrica and Cymbalta. I am currently taking 300 mg of gaba ( got as high as 2,400 but it’s useless) and 60mg of Cymbalta. I retired from the pharmaceutical industry after 40 years, and was 62 when diagnosed. My major complaint is burning feet, especially the bottom of my feet. I exercise routinely.
From my research it appears that there is not a lot of research on the etiology of neuropathy, but more on palliative treatment, and not much of that. Mayo is considered the #1 neurology hospital in the country. Does anyone have any first hand information as to what research is taking place there, if any?
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Hi @dunkinmacdougall, I too have idiopathic small fiber peripheral neuropathy and my neurologists best guess was that it is probably genetic. You will notice that we moved your post to an existing discussion on the same topic here:
--- Idiopathic Small Fiber Neuropathy Research: https://connect.mayoclinic.org/discussion/mayo-clinic-and-idiopathic-small-fiber-neuropathy-research/.
I had the opportunity 4 years ago to listen to a group of neurologists at a meeting for the Minnesota Neuropathy Association and an "idiopathic" diagnosis was the subject of a few audience questions. An 80 year old neurologist from the University of Minnesota brought the house down when he told us the idiopathic neuropathy diagnosis came from the idiot neurologist who did the diagnosing. While we all laughed he also said that if a person lives long enough they will eventually get neuropathy because nerve cells die just like other cells.
Idiopathic does seem like a bummer when there are some types of neuropathy where you have better treatments than for other types. I've always felt that not knowing is not the end of the world since there is no real cure for neuropathy so you just need to find a treatment that provides some relief for your symptoms.
Do you have any references for the neuropathy clinic in Utica?
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5 Reactions@magnum52, I just saw this clinical trial yesterday and sent an email to see if I might qualify for the study since I was diagnosed at Rochester Mayo with idiopathic small fiber PN mostly likely hereditary causes. You might want to check it out.
--- Stem Cells from Skin Fibroblasts in Patients with Hereditary Peripheral Neuropathy: https://www.mayo.edu/research/clinical-trials/cls-20319883?
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2 ReactionsWow! You nailed my thoughts. As a retired RN, I’m totally disgusted with healthcare today. Most providers are so concerned with following “protocol” that they ignore the patient. It’s exhausting to find someone who cares enough to listen. In my 38 year career I saw many changes and now that my husband and I are in our 70s we need a good provider but don’t know where to turn. The “system” has corrupted our healthcare with their “protocols.”
@lkhender It sounds like you might be ready to join the patient revolution - great place to learn how each of us concerned with the current healthcare today can hopefully turn it around - https://www.patientrevolution.org/.
Thanks @johnbishop. I'll certainly look at the website.
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