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Small Fiber Neuropathy: What helps?
Neuropathy | Last Active: May 17 2:03pm | Replies (284)Comment receiving replies
Hi @johnbishop, I am trying to find out if someone is getting treatment not only for the symptoms of SFN (pain treated with Gabapentin, Lyrica and Cymbalta,...) but the disease itself. SFN is so new in Neuroscience that research is more focus on detection than on a cure.... So my questions to you all is, are you on a treatment to slow down the degeneration of small fibers? If yes, what are you taking?
Replies to "Hi @johnbishop, I am trying to find out if someone is getting treatment not only for..."
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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@ncameron I got P.N. after taking a Quinolone medication, Norflox, for bladder infection in 2016. Toes, feet, lower legs, fingers hands lower arms tingling etc. but no neurologist here; saw one and decided not to take meds for it because I have so many allergic reactions and other illnesses (cancer survivor, tinnitus, ibs-d, c.diff, migraines, glaucoma, fecal inctontinence and some others not all at once but over the years.not complaining just saying) however in last few months have internal tremors which dont hurt but are very disturbing so that's why upcoming appointment - and also a lot of catch up dental work using lidocaine and epinephrine and others and I would like to ask neurologist IF these numbing agents has made P.N. progress to the internal tremors, if thats whaT I have along with teeth out nd a bit of a numb face one side..... there are a lot of nice people on this site are having much more problems with SFN than me and taking appropriate meds... but some seem to cause a lot of side effects also
yes: is there prevention as well as treatment is that what you are asking..... for one thing, medications that warn "could cause neuropathy" should be in GIGANTIC LETTERS ... best wishes in your search for information, J.