Small Fiber Neuropathy: What helps?

Then why is mayo regenerative doing so much research and using stem cells.

Also here in Houston Methodist hospital is doing research and some treatments with stem cells.
Just has to be reputable clinic.

@12061948, I'm sorry if you misunderstood. I was specifically addressing stem cell treatments as they relate to treating peripheral neuropathy and there has been zero successful treatments as far as I know. If you know otherwise I would love to hear about it. Mayo Clinic is doing a lot of research and also doing a lot of stem cell treatments for arthritis and knees but I don't know of any clinical trials being done for PN. Here is one of their announcements:

Mayo Clinic finds surprising results on first-ever test of stem cell therapy to treat arthritis
-- https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-finds-surprising-results-on-first-ever-test-of-stem-cell-therapy-to-treat-arthritis/

We had a guest speaker at the last meeting for the Minnesota Neuropathy Association that addressed the research being done across the spectrum for stem cell treatments. He closed his speech by telling us there is still some work to be done before stem cells can be used to treat neuropathy. I attached my notes from the meeting.

If I had the money, I would probably get a stem cell treatment for my bone on bone knee to see if it works. Mayo Clinic has done a lot in this area.

John

I agree that it would have to be a reputable clinic - hence the FDA warning due to all of the "stem cell clinics" popping up around the country.

I thought I came across that in my research too.

Has anyone seen Dr. Levine? From the research I have done on SFN it sounds like patients who have had doctors dig deep to look into deficiencies and diet have had the most success vs medications. Does he treat and find the cause? Thanks

Hi @jforrer69, welcome to Connect. I have not seen him but have heard of him. Here is an article he did:

Small Fiber Neuropathy: Disease Classification Beyond Pain and Burning
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5912271/

I have idiopathic small fiber PN but do not have any pain. I only numbness and some tingling with mine so have never had to take any medications which are all directed towards addressing the pain of neuropathy.

Have you been diagnosed with small fiber neuropathy?

John

My name is Elisabeth. I am 71 years old. I have itching, burning and pain in both my arms. it used to be sporadic, more in the Summer and when stressed. I broke my left arm in three places walking a dog and i since have had these symptoms almost permanently with period of slight remissions. During the remission periods it is still very uncomfortable. When i have a serious episode, it is very painful. During the first five months after I broke my arm, I basically spent a lot of time in bed (not because of the fracture) but the stillness calmed my nerves. The pain clinic at Mayo prescribed Gabapentine which helped with the pain, but I slept 14 to 16 hours a day. I had to stop. I live in Phoenix Arizona. I can never be exposed to the sun or the pain will start. My sister who lives in France is afflicted with the same ailment. she is 72 years old. Her doctors have told her to live with it because it is a disease of the elderly. Another one told her that she has used all of her sun capacity (whatever that means-I have never heard of such a thing) and to stay indoors. The problem is that even when there is no sun we both go into lengthy and painful episodes. I have gone through several doctors but no one seems interested enough. I finally was able to recently see a Mayo neurologist. I really like him. He prescribed an EMG recently. I believe he will be the one to help me. Let us hope so. If anyone who reads this blog has the same symptoms,

Hello @lavieauxusa1972, welcome to Mayo Clinic Connect. I have idiopathic small fiber peripheral neuropathy with only numbness and tingling in both of my feet and just above the ankles. I was diagnosed by a Mayo neurologist after an EMG, a few other tests and an exam. I don't really have any associated pain so there is not much they can do as far as treatments. I know stress can bring out a lot of different reactions and cause symptoms to get worse. I heard an 80+ year old neurologist speak a few years back at a Minnesota Neuropathy Association meeting and he made a joke (I think) about neuropathy. He said if you live long enough you will get neuropathy because nerve cells die eventually. He made the statement in a question and answer session after his and several younger colleagues had been asked how many people world wide are affected by neuropathy and the other two speakers mentioned a few world wide numbers first when he gave us his thoughts.

If possible, I hope you will be able to post again after your next appointment to let us know how your EMG went and if the neurologist provides a diagnosis for you.

John

Hi Lisa, first of all I'm sorry to hear of your diagnosis ( small fiber nueropathy,) because having it myself, I know the difficult road you are on. I just joined this group today, and hope to encourage others and be encouraged as well. I was diagnosed 10 years ago with Autonomic small fiber nueropathy, so a short answer to your question about your bladder being affected, yes, most definitely.
With the Autonomic part I have these issues daily, dry eyes, dry mouth, constipation, diarrhea, stomach aches, gas, nausea, feeling of fullness, feeling like I have to go often, problems urinating completely, starting and stopping, at night I go literally 5 times a night whether I drink or dont drink anything . So many other symptoms as well, heart palpitations, dizziness, hearing loss, tinnitus..
Any doctor should know that your nerves are responsible for so many actions in your body, temperature, heart rate, blood pressure, sexual function ect..
So on top of the other things we have deal with, messed up pain signals, we also have to deal with our daily bodily functions being messed with.
I am believing for a cure, and lean on God to get me through until then, if you ever need to just unload your frustration ( it needs to be done or else it can be overwhelming fighting this battle) I encourage you to do so here, because those of us who have this disease completely understand.
I pray Gods best for you
Dan