Mayo Clinic and Idiopathic Small Fiber Neuropathy Research

Posted by magnum52 @magnum52, Mar 29 2:59pm

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?

@magnum52 – I was diagnosed with idiopathic small fiber peripheral neuropathy at the Rochester Mayo Clinic but found no real help other than the diagnosis but that was because my symptoms were numbness only and there is nothing they can do for numbness. I wasn't aware of any specific research but did find some peripheral neuropathy clinical trials listed here for Mayo Clinic Rochester – https://www.mayo.edu/research/clinical-trials/diseases-conditions/peripheral-neuropathy

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@johnbishop

@magnum52 – I was diagnosed with idiopathic small fiber peripheral neuropathy at the Rochester Mayo Clinic but found no real help other than the diagnosis but that was because my symptoms were numbness only and there is nothing they can do for numbness. I wasn't aware of any specific research but did find some peripheral neuropathy clinical trials listed here for Mayo Clinic Rochester – https://www.mayo.edu/research/clinical-trials/diseases-conditions/peripheral-neuropathy

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Thanks for the info! Most of the studies involve CIPN. I don’t think there is much research in idiopathic small fiber neuropathy.

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@johnbishop thanks for posting the link – I'm always on the hunt for research trials. As @magnum52 mentioned, it seems most of the studies are geared towards those with chemo induced PN. There's one that address immune mediated, but it's closed. And, I believe you had to be local. If you're aware of any research trials that involve immune mediated PN, please share. Thank you!

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magnum52, would you mind letting us know how your about your visit and outcome with the Mayo Clinic in June? Many of us (myself included) have been diagnosed with idiopathic small fiber neuropathy, too with little relief or potentially other underlying causes which may have been overlooked. We could benefit from your experience. Thanks so much in advance. Hope you find some answers.

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There are a couple of upcoming webinars sponsored by The Foundation for Peripheral Neuropathy – https://www.foundationforpn.org/events/

Ask the Expert: Managing Peripheral Neuropathy AND a Pandemic
Thursday, April 1
2:00 – 3:00 p.m. ET
1:00 – 2:00 p.m. CT
12:00 – 1:00 p.m. MT
11:00 a.m. – 12 p.m. PT
Register for the webinar – https://register.gotowebinar.com/register/5493381507243281933

Nutrition for Patients with Peripheral Neuropathy
Thursday, April 22
3:00 – 4:00 p.m. ET
2:00 – 3:00 p.m. CT
1:00 – 2:00 p.m. MT
12:00 – 1:00 p.m. PT
Register for the webinar – https://attendee.gotowebinar.com/register/5945564460258907151

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John, you are certainly an invaluable source of wonderful information! Thank you so very, very much!

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@sf2021

magnum52, would you mind letting us know how your about your visit and outcome with the Mayo Clinic in June? Many of us (myself included) have been diagnosed with idiopathic small fiber neuropathy, too with little relief or potentially other underlying causes which may have been overlooked. We could benefit from your experience. Thanks so much in advance. Hope you find some answers.

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I would be happy to. This is it for me. If nothing comes from it, I will just have to accept my situation until the good Lord calls me home.

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After 13 years with Small Fiber PN – I have found no encouraging answer to the overall discomfort of this wretched disease.
My pain gets worse at the end of the day & my only salvation is riding my road bike as often as possible. I can ride more than 20 miles a day but I can barely walk a mile. Any suggestions?

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Just to add- I’m on 300mg Lyrica a day which takes care of most of the pain but none of the numbness. I’ve tried heat & ice which give some short term relief. I get PT twice a week for balance & strength, which is helpful. CBD cream also offers some relief but not much yet. Some oral CBD might help – I’ll keep you posted, but I’m not optimistic. Don’t bother with TENS but it may offer short term relief…it didn’t do much for me. Laser did not work for me. Botox is next – we’ll see.
So I guess I’m an expert but I’m looking for someone who knows of something better. It’s a life long project.

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@solobeee

After 13 years with Small Fiber PN – I have found no encouraging answer to the overall discomfort of this wretched disease.
My pain gets worse at the end of the day & my only salvation is riding my road bike as often as possible. I can ride more than 20 miles a day but I can barely walk a mile. Any suggestions?

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Hello @solobeee, Welcome to Mayo Clinic Connect. Unfortunately, small fiber PN is not a condition I would wish on my worst enemy so to speak. I'm glad you found Connect where you can learn what other members have shared helps them and hopefully find some relief for the pain. There are a couple of discussions you may wish to join to read the experience of other members including myself. I have small fiber PN among other conditions but I only have numbness without the pain. My neurologist said I'm in the 20% group of folks with PN who don't have the pain.

– Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/405325/
– Living with Neuropathy – Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/
– Illusive Diagnosis, Pain Increasing: https://connect.mayoclinic.org/discussion/illusive-diagnosis-pain-increasing/

What helps me is taking each day one step at a time and learning as much as I can by researching my condition and reading everything I can find on new research and treatments. Are you able to share a little about any treatments you've tried or thought about trying?

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I am glad the site is back on. I have Neuropathy in my feet & legs & the Gabapentin & Cymbalta doesn't help much.
Any suggestions are helpful & I learn a lot from other people.
God Bless
Genie

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@tigreyes2004

I am glad the site is back on. I have Neuropathy in my feet & legs & the Gabapentin & Cymbalta doesn't help much.
Any suggestions are helpful & I learn a lot from other people.
God Bless
Genie

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@tigreyes2004 – Have you tried any alternative or natural treatments for your neuropathy to see if they might offer some help?

– Complementary + Integrative Therapies: https://www.foundationforpn.org/living-well/integrative-therapies/
– How to treat peripheral neuropathy naturally: https://www.medicalnewstoday.com/articles/326779

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