Ideas for pain relief from Small Fiber Neuropathy (SFN)

@burningfeetinphoenix here...I have been researching personalized stem cells as a way to deal with SFN. I came across a paper published in January 2019 outlining this potential technique for helping with SFN burning pain. This is the name of the paper: "Pain relief in a neuropathy patient by lacosamide: Proof of principle of clinical translation from patient-specific iPS cell-derived nociceptors". Has anyone heard of or researched this potential treatment? Pam

Hi @burningfeetinphoenix -- I found the paper and it does sound promising but the caveat is that only one person was involved in the test which leaves a lot missing.

Pain relief in a neuropathy patient by lacosamide: Proof of principle of clinical translation from patient-specific iPS cell-derived nociceptors
-- https://www.ebiomedicine.com/article/S2352-3964(18)30546-2/fulltext

It's also referrenced by NCBI here -- Pain relief in a neuropathy patient by lacosamide
-- https://www.ncbi.nlm.nih.gov/pubmed/30503201
"FINDINGS: We identified patient-specific changes in iPSC-derived nociceptor excitability in MEA recordings, which were reverted by the FDA-approved compound lacosamide in vitro. Using this drug for individualized treatment of this patient, the patient's pain ratings decreased from 7.5 to 1.5. Consistent with the pain relief reported by the patient, microneurography recordings of the patient's single nerve fibers mirrored a reduced spontaneous nociceptor (C-fiber) activity in the patient during lacosamide treatment. Microneurography recordings yielded an objective measurement of altered peripheral nociceptor activity following treatment."

Hi @johnbishop...I am hopeful. There is an outfit called GioStar that does something similar to this...I have spoken to them and read the credentials of the Dr. who heads up GioStar. Sounds impressive but I have been "hoodwinked" before! BTW I could not get in to Mayo Jacksonville or Mayo Phoenix. They do not take patients with SFN. I am hoping the Phoenix Neurological Institute can help me. Dr. Todd Levine who as written many scholarly articles on this condition, is one of the Dr's and researchers there. I see them on October 11th. Found out they are doing two clinical trials on SFN. Pam

Hi Pam -- I hope you can let us know how your appointment goes in October. It does sound hopeful but like you I've spent a lot on what seems to be a lost cause. Good luck! John

How do I find the discussion on these alternatives that you referred to?

What is the difference between small fiber neuropathy and peripheral
neuropathy?

Small Fiber Peripheral Neuropathy ...all the same, shorts cuts on how it is referred to.

@burrningfeet in Phoenix here...My understanding is small fiber neuropathy (SFN) is a specific kind of peripheral neuropathy and it too has specific kinds of forms but generally affects the small nerve fibers in the body. Peripheral neuropathy is a more general form of neuropathy affecting the nervous system of the body and and can include large and small nerve fibers Most cases begin in the feet and progress upwards but not always. Sometimes these nerve fibers are not even lost but can be damaged or injured say due to an accident or even non-functional... but there is pain but sometimes numbness or other symptoms. PN includes such things like Tarsal Tunnel Syndrome or nerve entrapment, nerve injury etc. Can include almost anything except nerves affecting the spine and brain. The scientific literature is not always clear on this as I have seen SFPN used as an acronym for Small Fiber Peripheral Neuropathy and Small Fiber Polyneuropathy...not to be confused with SFMN which affects one particular peripheral area of the body...There is an article Todd Levine that breaks SFN down into very specific types. I'll look through my files and see if I can find it. I welcome any other clarification as I am new to this...Pam

@terryrose, @burningfeetinphoenix and @rwinney -- This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.

Hello @cncwi17, Welcome to Connect. You actually posted your question in the discussion on the alternatives @colleenyoung was referring to here:

> Groups > Neuropathy > Ideas for pain relief from Small Fiber Neuropathy (SFN)
-- https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/

You can scroll to the top of the discussion and read through the posts in the discussion (8 pages worth now) to see the alternatives being discussed.

Are you able to share what type of neuropathy and symptoms you have?