Non-Length Dependent Small Fiber Neuropathy

I struck out in the what is causing it department. I felt good that I had a treatment plan for if/when things got worse. Then my doctor left the practice and am back to square one - still no definitive diagnosis and back to no treatment plan.

Did you ever find out a cause for yours

Do you know what caused it?

No. I went to top neurologists in New York but no one could figure out the cause (even have done genetic testing). I am now just treating the symptoms. Unless there is significant advancement in medical technology, I don’t think I will ever find out. I hope you can find your cause.

Have you had a Sjogren's work up? It is a big cause of SFN although, mostly length dependent, I think.

I was wondering how you are doing now? I read your post from a few years ago and I am in a very similar boat with very similar symptoms and I’m terrified of the progression. I’m only 29 and have a handful of other health stuff and often wonder how this is going to play out for me

Response to @sdmarnaof2 - It has been more than 4 years (December 2020) since the initial onset. I still have the symptoms especially the burning sensation and the ache on the left side of my face and mouth burning. However, they have not gotten worse (keeping my fingers crossed). In fact, I've weaned off of the gabapentin doses and stopped taking duloxetine. I still have my good days and bad days but the symptoms have improved overall. What have I been doing differently? For me, any kind of movement activities (walking, exercising, just being out and about) really help. I always have an ice pack near by for the burning on my face which is the most frequent symptom for me. I also try to eat healthier although I have tried various diets (no sugar, no gluten, no caffeine, no dairy, you name it!) but have not noticed much improvement from the diets. But I do feel better in general from eating less and eating healthier.
I asked a top neurologist in NYC whether if this will get worse over time. She said not necessarily, it could remain stable (I'm praying she is right). You are young (I'm not at 55!), please don't despair. Stressing about the progression will make it worse. Try to find the underlying cause if you haven't had all testing done. Keep your spirits up! My thoughts are with you.

Wow, thank you so much for taking the time to respond to this old post. I really appreciate hearing this. Did they ever figure out what caused yours? Mine started immediately after I had Covid April of 2022. I have Dysautonomia so was already at a high risk for nerve issues in my future. I am so glad to hear that you are stable and will be hoping you continue to heal!

I've done every test under the sun and I still have not found a cause. I suspect it is some undiscovered auto-immune disorder. I heard that non-length dependent SFN is typically auto-immune related although all mine came back negative (at least ones where there is a test). I continue to read up on articles and research including visiting this forum. I continue to benefit tremendously from this forum and everyone's input (thank you all). Let's continue to support each other in any way we can.

I have non length SFN with a chronic/acute onset . I’ve had it a year now and struggling with the constant burning and pins and needles. Doctors can’t find a cause. Can my neuropathy improve over time Or can it be reversed
Thank you Alan