Idiopathic Small Fiber Neuropathy Research

Hi @kdallen, I'm sorry to hear you are still struggling with small fiber neuropathy. You mentioned your GP believes your condition has advanced to autonomic neuropathy and you think a referral to Mayo might help. I'm no expert but a lot of us have been in similar situations and worried about progression of our condition. The big question I would ask my GP is that will my treatment options change if I go to Mayo and if they are able to determine that I have autonomic neuropathy. My guess is it doesn't make a difference, they can only treat the symptoms since there is no cure for neuropathy.

If your current treatment isn't controlling the pain or other symptoms, have you looked into any complementary or alternative treatments? Have you seen the list of treatments on the Foundation for Peripheral Neuropathy's website? They also include complementary and alternative treatments which might be helpful — https://www.foundationforpn.org/treatments/.

I had a really bad episode a few weeks ago, really bad, thought I end up in ED.😣
Since then I have about 4-5 prunes every single day lunchtime with yoghurt or after dinner as sweet snack and didn't have constipation problem since.
Just a thought, it's working for me.😉
Or maybe the cannabis oil I have every night now helps too.

John - Again... you are right about treating symptoms. Many of us who have been to Mayo likely walked out with an answer on what type of PN we have and at the same time, no cure. I feel we go into this looking for the cause and go through the typical tests. Is the cause medication related, some toxin, an injury for a prior fall or something we inherited? With well over 100 different causes, pin pointing it down is difficult. So, without the cause, the best we can do is treat what we can and that is the symptoms and keep hoping for a cure.

I use prune juice to prevent constipation.

I Use clearlax That I get at Walmart. It is a powder that is pretty much tasteless that dissolves in any liquid or water. I’ve used it for years and it always works.

Just saw this in my latest Foundation for Peripheral Neuropathy newsletter and thought I would share it.

Webinar held - February 22, 2023:
Idiopathic Neuropathy with Norman Latov, MD, PhD
This webinar covers idiopathic neuropathy, its definition and diagnosis. During this program, Dr. Latov explains how to tell if it’s progressive and what do if it keeps getting worse. Dr. Latov also talks about when to consider undergoing a nerve and muscle biopsy and what might those tests show, as well as reviewing some off label or experimental therapies and also evaluating alternative therapies.
--- https://www.foundationforpn.org/webinar-idiopathic-neuropathy-with-norman-latov-md-phd/

John, this was a great webinar. Dr. Latov explained idiopathic PN and answered the questions put to him, The website for the Foundation for Peripheral Neuropathy, which sponsored the event and offers much more information, is a valuable resource. Much appreciated.

Is there such a thing as a definitive diagnosis of the type of neuropathy that a person may have? I am told I have idiopathic neuropathy. That tells me they don't know.
I have been to a seminar for a clinic in Utica Michigan which claims they can help discover the cause of a person's neuropathy.

@dunkinmacdougall
neuropathy, is it peripheral neuropathy? I have PN because my nerves were, and continue to be damaged by an autoimmune disease that reduces the blood flow in my arteries.
This autoimmune disease is rare so many doctors have not seen it. Check out Vasculitis. There are about 15 diseases that fall under the “umbrella” of Vasculitis. Many of them inflame the arteries so blood flow is restricted.

The Vasculitis I have is cutaneous polyarteritis nodosa. It’s one of the most rare diseases. It gave me PN. My feet, and legs are very painful at times.

I hope you find an answer. There is no cure, only treatments that can help you with some of the symptoms.

There are so many kinds of neuropathy that I'm not sure there is a one size fits all test to determine the cause. If they start to talk you into a bunch of tests/treatments not covered by insurance, be wary. Places like Mayo Clinic or the closest teaching hospital (university hospital) would be your best bet. They see more odds cases and they will be willing to pursue it. Common meds for neuropathy may also help you even if you don't know the specific type. Best of luck to you.

My neuropathy was initially listed as peripheral neuropathy, cause unknown. They had no idea what was causing my issues and the abnormal EMG NCS results. They wanted to do a nerve biopsy and my mother said no. I honestly didn't pursue the cause after my initial frustrations. It was finally identified 24 years later when my son had some serious issues and received genetic testing. I was so happy to have a name and explanation. They guessed CMT, but it was HNPP (Hereditary Neuropathy and Pressure Palsies) -- in the same family. One disorder has an extra chromosome and one is missing a chromosome. HNPP is rare. Most doctors including neurologists haven't heard of it. With HNPP, the protective myelin sheath starts disappearing leaving the nerves very prone to damage. My neurologist who used to work at a teaching hospital was not only familiar with HNPP, but had seen four patients with it in the past.