Your Thoughts on a Foundation for Small-Fiber and Autonomic Neuropathy

@cyp238ress There are already a few of them out there that you might want to take a look at:

--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
--- Neuropathy Commons: https://neuropathycommons.org/
--- Hereditary Neuropathy Foundation: https://www.hnf-cure.org/
--- Neuropathy Action Foundation: http://www.neuropathyaction.org/

Nonprofit Organizations Related to Neuropathy - list provided by Neuropathy Commons above: https://neuropathycommons.org/patient-support/nonprofits-support-groups

@cyp238ress, I'm going to keep an eye on this thread. I'm curious to see if (1) others respond and (2) what they have to say. Also, have you had a look at any of the sites suggested by @johnbishop? If so, have you any thoughts on those? –Ray (@ray666)

Ray,
I am aware of the Peripheral Neuropathy Association and donate to that foundation each month. There is another foundation called Dysautonomia International that focuses on autonomic dysfunction, with it seems a focus on POTS. However, there is not a foundation that I am aware of that focuses specifically on small-fiber neuropathy and related autonomic dysfunction and the immense pain and quality of life impact that it has.

The prevalence of SFN is, I theorize, far higher than posited by the medical establishment. There are studies demonstrating that many people diagnosed with fibromyalgia actually have SFN. This was proven via punch skin biopsy of the study participants, where 40-50% came back with reduced intraepidermal nerve fiber density (IENFD), the gold standard for a definitive SFN diagnosis. Moreover, SFN is known to impact the GI tract and the heart, amongst other organs, yet many gastroenterologists and cardiologists do not suspect SFN when patients present with cryptic symptoms. Finally, there are reports of COVID causing several SFN cases, and many long-COVID studies are ongoing. I suspect that some people suffering from long-COVID have developed SFN. Given all of this, I do wonder whether a more focused foundation would get us closer to valuable research and therapeutics as compared to a foundation covering PN generally.

cyp238ress, I thought you'd have received a bushel of replies by now. I'm passing through at the moment, running off to lunch (well, hardly running). I'll check back later. –Ray (@ray666)

I was appalled that they wanted to dole me out gabapentin without even giving me a diagnosis. Gabapentin has unpleasant side effects. Being on this site really helps me. At this point I have almost diagnosed myself.

My first Peripheral Neuropathy diagnosis was in 2003 however I had been suffering with foot numbness and pain for many years prior to my first visit with a neurologist and the resulting diagnosis. So I took my prescription for Gabapentin in hand and struggled for another 19 years before severe symptoms led me back to another neurologist, a skin biopsy and other electronic tests with a resulting diagnosis of idiopathic small fiber polyneuropathy and autonomic neuropathy. A few vitamins were prescribed and that was it. It was clear the Dr had no idea how to proceed. I have since learned that few if any neurologists can move past diagnosis.
I would be very interested in a sharing and research organization focused on SFN and the resulting autonomic problems.

It is needed but tremedous undertaking. I have not been happy with Foundation for Peripheral Neuropathy's staff or list of referrals. I ccomplained to director and asked that Board President contact me and never heard anything.

I'm curious, @lewin, what had you contacted the FPN about? I've always been surprised by the speed with which they've replied to me. Of course, my matters may have been simple matters, readily responded to. ––Ray (@ray666)

I agree about neurologists. My pain management doctor has started me on Low Dose Naltrexone. I have been ever so slowly ramping my way to 4.5 MG. I am allergic to many pain relievers so this is my last ditch effort. So far I have had relief of my CRPS and SFN constant annoying pain. About at least 70% worth.

Wouldn't you know? Only yesterday, I had a follow-up EMG, and the neurologist assured me that my neuropathy is not small but LARGE fiber. So, here I sit on a bright, sunny, spring-like Colorado morning, realizing I'm going to have to start studying up all over again. 🙂 However, I'll still keep an eye on this thread. I firmly believe that only research and advocacy will ever lead any of us out of this neurological morass we find ourselves in. Best wishes to us all! ––Ray (@ray666)