Idiopathic Small Fiber Neuropathy Research

Posted by magnum52 @magnum52, Mar 29, 2021

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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Ray Kemble | @ray666 | 4 days ago

In reply to @drdianeschneider "Ray, thank you so much for your posting. I have not heard of EB-N5, so I..." + (show)

Good morning, drdianeschneider (@drdianeschneider)

Nor did I look forward to a second EMG, but my neuro strongly advised, and once I'd had it and heard the neuro says he saw little or no progression, I was delighted I'd consented.

"Walking on bubble wrap … " What a perfect way of describing what poor balance feels like! A few years ago, my partner and I gave up our mountain cabin because our outhouse was a "short" forest walk from the front porch. Traveling to and from the outhouse, especially at night (and often with some urgency 🙂 ), was just like you say: hiking on "bubble wrap"!

Cheers!
Ray (@ray666)