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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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This drug is and when approved will be for diabetic patients only. I tried to get drug...not available in US unless for Research use. Japan has pirenzepine in tablet form. I live in NY. Compounding pharmacy here said no on compounding to make a cream since I don't have a prescription. So i would have to make into a cream myself..might try though. Trials are going well. I do not have neuropathy caused by diabetes.
I'm with you with the "Satanic ATVs". They would run me out right away. You have a great Sunday
Hi, Sue,
Yup. Those ATVs drove us off the high country. When we'd first found the cabin, all around was delightfully quiet. We're year-round city dwellers, but for a portion of every year our aim was to get away from the city's noise. (Not to be misunderstood: I can tolerate city noise as well as the next fellow; after all, I grew up in NYC and spent a chunk of my life in LA.) The ATVs made life in the hills intolerable.
Best wishes,
Ray
Although the research was on diabetic PN they have stated it will work to regenerate nerves for other causes. The have also done research for chemically induced PN and had success. they only do research using these type with known causes because they are better control groups. They are trying to get phase 3 trials completed in Europe since pirenzepine is already an approved safe drug there and could be faster to get final approval. Maybe if approved there it will help get approval in US.
Thank you for some encouraging news. I could not find a country in Europe where pirenzipine is an approved drug. Perhaps you could direct me and would it be approved for neuropathy or other conditions so I could get a Doc there to prescribe offlabel. I would travel to get an opportunity to try this drug.