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Small Fiber Neuropathy: What helps?

Neuropathy | Last Active: May 17 2:03pm | Replies (284)

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@johnbishop

Hi @ncameron, I am of the same mind frame as @jeffrapp on when it comes to a treatment that can regenerate nerves. WinSanTor has a clinical trial on Pirenzepine that is supposed to work by helping nerve regeneration - https://winsantor.com/ --- A 24-Week Study of Topical Pirenzepine or Placebo in Type 2 Diabetic Patients (T2DM) With Peripheral Neuropathy: https://clinicaltrials.gov/ct2/show/NCT04005287. I think it's a long way off to help most suffering from neuropathic pain (just my opinion).

I think the supplements I'm taking have helped slow and possibly stopped the progression of my small fiber PN but I only have numbness that it's pretty subjective on my part unless I want to pay for a nerve conduction test or skin punch biopsy to see if it's gotten any better or worse. I can say that I'm finally having a little more feeling in my feet lately but they are still numb. It's just that I can feel areas on the feet and wiggle the toes and they feel more normal now than a year ago. I shared that in my previous post that I think you saw in the Member Neuropathy Journey Stories: What's Yours discussion.

I think all of us would love a fix 🙂 to take us back to pre neuropathy days. I had held out hope for a long time on stem cell therapy for neuropathy but there doesn't seem like there is much support and testing on it. We had a researcher speak at a meeting of the Minnesota Neuropathy Association on stem cell therapy research in August of 2018. I took some notes and added the research links when I got home. The last section of the notes details why the science is not there yet.

Minnesota Neuropathy Association Meeting Notes Aug 4, 2018:
- https://cdn.prod-carehubs.net/n1/748e8fe697af5de8/uploads/2019/02/18Aug04-MNA-Mtg-Notes-1.pdf

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Replies to "Hi @ncameron, I am of the same mind frame as @jeffrapp on when it comes to..."

Wow John, I was there at that meeting? Was I asleep? Thanks for the notes and references.
May you find joy today.
Chris

I am going to reiterate what John has said. To my knowledge Winsantor is the only regrow treatment in the works that has shown promise, but it looks to be years away unless you qualify for a trial.

Knowing John I take the same vitamin supplement program that has stopped and I feel reversed my neuropathy progression. Now I did also do a treatment called Neogen Synaxes that I feel had really good results with but that’s purely based upon feeling not fact. I tried multiple other treatment programs with zero results.