Living with Neuropathy - Welcome to the group

Hello,

I have not tried Acetyl L Carnitine and Alpha Lipoic Acid supplements. I will look into them! Thanks!
I learned from the Foundation for Peripheral Neuropathy webinar that since I have non-length dependent small fiber neuropathy, Sjogren's autoimmune disease is the cause of my sfn. I am reaching out to a new rheumatologist who treats Sjogren's and I am hopeful that getting the autoimmune disease under control (if possible) may reduce the sfn. and erythromyelagia burning fire flares too.
My eyes are so dry and I have not been able to get the dryness under control. The opthamalogist has tried EVERYTHING. I even get tears made from my blood serum and that still does nothing. Hopefully, some immunosuppressants will help my entire system. Crossing my fingers that I can get some better relief.

That is a great question @jgoodall, It can get a little confusing trying to follow a discussion sometimes due to replies to a specific member or posting for everyone in the discussion. Here's some information in the Help Center explaining how it works.
--- Replies and @mentions: How do I know who is replying to whom? https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/

There have been many improvements made to the search function in Connect. Here are the results by typing a term in the search box at the top of any Connect window:

--- "Sjogren's" - https://connect.mayoclinic.org/search/discussions/?search=Sjogren%27s%20%20
--- "erythromyelagia" - https://connect.mayoclinic.org/search/discussions/?search=erythromyelagia
--- "Sjogren's + erythromyelagia" - https://connect.mayoclinic.org/search/?search=Sjogren%27s++%2B+erythromyelagia

@eirea
Why don't you ask your physician about where to go for stem cell therapy treatment and if it's effective. I would trust your doctor and not some potentially fly by night clinic you don't know anything about.
Jake

Want to learn about Small Fiber Sensory Neuropathy from other members. Has Gabapentin helped?

Welcome @susieqmf, There is another discussion that you might find helpful:
--- SFSN: Symptom Relief: https://connect.mayoclinic.org/discussion/sfsn-symptom-relief/

Hello. I'm new to this group and look forward to learning how to handle some of my health concerns. I have nerve damage from the 6 weeks of radiation I endured 10 years ago from cancer.

Ten years ago I was treated for anal cancer. The nerve damage has grown unbearable over the past 5 years. I suffer with radiation proctitis and lumbar multilevel degenerative disc disease and a fractured sacrum. My question is, how many mg of R-ALA should I take daily? For 7 days I've been taking 100mg Doctor's Best Stabilized R-Lipoic Acid with BioEnhanced Na-RALA . It cost me $19.77 for 60 caps at Amazon. I don't know how long it takes for this product to ease the nerve pain. I just know that I am not feeling an improvement. My greatest desire is to be able to walk without pain. My hip joints lock up on me. My back hurts so bad I have to find a place to sit. I have no life and it's really getting to me. I'm an activity seeking person and need relief from chronic pain. Once again, how may daily mg should I take? BTW, I just started seeing a PT and I believe they will help me. But I need pain relief now. Help!

Welcome @cb3, The protocol of supplements I take for neuropathy has a 1200 mg daily dosage of Na-RALA (600 mg morning/evening) along with other supplements. My neuropathy is idiopathic and I only have some numbness and tingling. I'm wondering if you might find the following discussion helpful.

-- Looking for tips on managing Radiation-induced proctitis https://connect.mayoclinic.org/discussion/radiation-induced-proctitis/

The Foundation for Peripheral Neuropathy has a list of supplements folks have found helpful for neuropathy on their complementary and alternative treatments here - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

Thank you, John. I'll check out those links. CB

I am not too good using technology. But, I do keep trying. 😉 I am wondering if anyone can tell me about the tests that confirm neuropathy. If they cannot cure or heal it (no treatment for it) why subject myself to such a painful test or tests? I don't want gabapentin (sp) because I understand we can build up a tolerance to it, causing a need to increase the mgs. I don't want that. I am finding that neuropathy affects my balance and my gait. I feel that I walk like a toddler walks. It's humiliating! Has anyone really had any improvement with PT?

Welcome @suchadoc, You sound a lot like me years ago when I first started having neuropathy symptoms only I didn't have pain as a symptom, just some numbness and tingling. My wife told me I walked like an old man even when I was in my 50s and younger. The answer is different for each of us as to why we would want to have the tests and get a diagnosis. Although there is no cure, there are treatments that may help with the pain. Neuropathy Commons has a good explanation of tests that are used here - https://neuropathycommons.org/diagnosis/diagnosing-peripheral-neuropathy.

I myself didn't think the EMG and nerve conduction tests were painful but they were a little uncomfortable. I didn't have a skin punch biopsy so can't share any experience. There are many things you can do to help improve your quality of life. I do think PT can help with balance issues. I've had a few sessions that gave me exercises I can do at home that help some with balance. You might find some good suggestions on the Foundation for Peripheral Neuropathy website here - https://www.foundationforpn.org/living-well/.

There are quite a few discussions on what helps with neuropathy. Here is a link to the discussions and comments from other members - https://connect.mayoclinic.org/search/discussions/?search=neuropathy%20what%20helps.

Can you share a little more about your neuropathy symptoms?