Ideas for pain relief from Small Fiber Neuropathy (SFN)

@barbie that's a short answer from a pain management doctor. Well, I did a quick search for you but I'm still not sure I get the point the doctor was trying to make with the text.

Mesenchymal stem cell exosomes: a two-edged sword in cancer therapy
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6488158/

The Mayo Clinic uses Nanoparticle Tracking Analysis to Study the Behavior of Exosomes and Microvesicles
-- https://www.exosome-rna.com/the-mayo-clinic-uses-nanoparticle-tracking-analysis-to-study-the-behavior-of-exosomes-and-microvesicles/

Many thanks @jeffrapp !!!

@lisalucier - Hi Lisa, The results of the 2nd biopsy at the "certified" lab showed that I did not have Small Fiber Neuropathy. All of my nerve fiber densities (at three locations) were normal for my age. One was very slightly below normal but not much. These results were amazingly different than the first biopsy done this past summer which showed my epidermal nerves "severely" reduced in the two locations biopsied. For those inquiring about my second opinion, yes, my second opinion and second biopsy was ordered by a neurologist. In fact, it was ordered by Dr. Todd Levine who actually designed the protocol for the nerve biopsy test. Also, I never considered getting the "stem cell injections" from the Podiatrist. I had researched this treatment (actually with exesomes produced by stem cells). These exesomes do show promise but so far have not been fully researched and tested on humans. BTW Dr. Levine wrote the "bible" on SFN which is the book mentioned previously on this forum. I see him in February to review the results of the biopsy. The good news is the burning in my feet has subsided. However, I am still taking the Cymbalta and Phenytoin 10% compounded topical. I am not convinced nerves can grow back in a month although Dr. Levine seem to think this might be a possibility. I never found out what caused the supposed SFN and I'd still like to know. I'll keep searching as it may come back this summer when it is 120 deg out! Pam

Great news @burningfeet! I never had the biopsy done, my neuro didn’t think it would change her treatment which was gabapentin for the pain. She is willing to do the test if I request but I also do not see how the results will effect any change in treatment for me. FYI, Dr. Levine does have a financial interest in one of the few labs available for testing the biopsies; from everything I’ve read, my knowing the cause will not change the treatment of idiopathic neuropathy unless you are found not to have neuropathy at all such as in your case. Hope your feet continue to improve. Helen

I found this site - https://directbiologics.com

I don't understand "nerves growing back". My neurologist said that my nervous system is dying (parts of us die as we get older, with some people it's the heart or liver, kidneys or worse yet: the brain). Science hasn't yet devised a way to resurrect a dying nervous system. Medical researchers used to think that neuropathy was just for diabetics but not any more -- there are too many people with neuropathy who don't have diabetes. It sounds like it doesn't have to have any cause other than "aging". More will be revealed to us as research continues. Peggy

My Neurologist said it is so common among older folks that it's also known as 'Greying of the Nerves'....

@helennicola - @burning feet here again. Yes I do know Dr. Levine has a financial interest in Corinthian Reference Lab. So what I would say about all this is either 1. The first biopsy was not done correctly or 2. The first biopsy was correct and the second showed the nerves grew back. There are other possibilities 3. 4. etc... too, but let's assume one of these two. The Dr. said and I quote "The burning feet was due to SFN (he also said the first biopsy was done incorrectly so how would one know?) due to a virus or something that went away". The second biopsy showed this was true (3. or this second biopsy could have been done incorrectly also). It is my understanding that small fiber nerves can grow back but take a long time to do this and usually because whatever was causing the SFN was removed from the equation...certainly not in one month however. I am attaching the report from Corinthian. My original biopsy showed 1.3/mm in the foot and 0.3/mm in the lower leg. The one result was slightly lower than normal but not low. Those "normal" ranges are age adjusted as these nerves do diminish with age. The significantly versus mild for the lower thigh comments in the report is confusing and I will discuss this discrepancy with the Dr. at my next appointment. I did get color photos of the epidermis and dermis with this report but they are difficult to see...So, my experience with the biopsy technique has not been conclusive so perhaps it is not worth having as you suggest...Pam

@iceblue - @burningfeet here. Yes, SF nerves diminish with age. Samples would be age adjusted and there is a normal range as a fucntion of age. Pam

Interesting ... I'm glad Mayo Clinic hosts this web loop so we can pass around information and the latest news,