Who else has Autonomic Neuropathy?

Hello @lubelle, Welcome to Connect. I know it's difficult trying to help your son with his small fiber neuropathy condition. You mentioned in another post that he is physically fit and health conscious which is a good thing. Thank you for advocating and helping your son find something that helps his neuropathy symptoms. There are many types of treatments available including complementary and alternative that may or may not help which is why it is so difficult to deal with this condition. The best thing you can do is learn as much as you can about the condition and treatments that are available.

Here are two sites that I have found helpful in learning about neuropathy and treatments:
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

You might also find the following discussion helpful where members including myself have posted about our journey with neuropathy and what has helped - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Does your son have any pain associated with his neuropathy symptoms?

Yes, mainly his feet. He uses ice baths daily, especially after working out in gym or walking (can't run much anymore due to balance issues).
Thank you for the information you sent and I will definitely check this out.
He so does not trust the medical community any longer with what they put him through - so many bad diagnosis that seemed to just send him further down the wrong path - leading to depression and more anxiety.
I see Northwestern University is having success with VM202, but haven't had the chance yet to really understand what that is.
The hopeful news was that his neurologist did say she has seen this completely just go away for some people. Not likely, but hope for some!
Again thank you and I"ll be watching this much closer.

I was recently diagnosed with small fiber polyneuropathy and autonomic neuropathy after 12 years of symptoms. I expereince pain all over my body, burning, tingling. crawling sensation, temperature dysfunction, digestive issues, bladder issues, heart issues, high blood pressure . I have difficulty with balance some days and expereince extreme fatigue at times. I am learning my limits and try to keep going. I was told to keep moving because as soon as I stopped, I would stop permanently and be in a wheelchair. I walk 30 minutes a day and do aqua therapy two times a week. I take pregabalin and duloxitine for the neuropathy. Everything symptom is treated as needed and there is no cure only control.

Here’s a good review of duloxitine. It may provide some answers and advice.
https://en.wikipedia.org/wiki/Duloxetine, the generic of Cymbalta.

I don't have a POTS problem, but I remember from past skimming of this site, that many people who do are seeking help with diagnosis.

I just encountered this article in the New York Times, and thought sharing it here might help others.