Just Diagnosed with Small Fiber Neuropathy

Hello @maryflorida, Thank you for the private message. I thought I would answer it here in the Just Diagnosed with Small Fiber Neuropathy discussion so that other members who have been tested for small fiber neuropathy can share their experience with you. You mentioned in your message that your previous doctor diagnosed you with small fiber neuropathy but did not use a skin punch biopsy. You were wondering what additional tests I had done. My Mayo neurologist used a nerve conduction test along with some labs and a physical examination. I did not have a skin punch biopsy but it is a definitive test from what I've read. You mentioned your new doctor had an ANA test done and you were wanting to know more about it? Here's more information about the Antinuclear Antibody (ANA) test - https://labtestsonline.org/tests/antinuclear-antibody-ana.

Here is a short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed: https://youtu.be/3FrQ7Glvgok.

Since your new doctor ordered the ANA test and it was negative, did you discuss the test results with the doctor and ask what the diagnosis might be or what specifically they were looking for?

My doctor has not called me to follow up. I looked at your remarks and find that maybe I have the polymyalgia rheumatica as well. I looked it up and it seems to be a good description, even the part about over 50, female, and from Ireland.

I just was diagnosed with SFN on Oct 6th. Feet and lower legs burning sensations sometimes to groin area which started around August 20th. We think that it may be due to a reaction to my second Shingrix injection on May 21. I did have a month of dizziness about a week after the injection. Also the orthostatic hypertension prior to the burning feet. However, during the winter months I did have cold feet issues which I had never experienced before. I will have more blood tests for vitamin B6 and heavy metals. I was prescribed Gabapentin 300mg at night which I can increase every 2-3 days up to 3 times a day. My first day on it was very good and had minimal symptoms, just felt a little light headed for awhile the next morning. This is my second day and so far not too bad at 10:00am; I do feel some burning. We shall see. I would like to pursue trying to treat the causes. I am told to seek out a Naturopathic Doctor. Has anyone tried this? Anyone heard of RST Sanexas? It is cell signaling treatment to optimize the energy between cells and opens up the blood vessels. There is a chiropractor in Oceanside CA that has this treatment. John Harper DC You can see his website. Don

Hi @dont
I have never heard of RST Sanexes. I googled it, and all I saw was ads and promotions. I looked it up on a medical site and couldn't find anything.
From your description of what it alleges does, and the fact it is being prompted by a chiropractor (beyond his normal field of practice) I would proceed very carefully and skeptically on this.
I read your similar post on another topic, where you claim that this procedure is approved by the FDA. Where did you get that information?
Try to approach your treatment and diagnosis in an orderly fashion, rather that shotgunning. Allow one physician to do his/her thing. When complete, if you still have questions or needs (you very likely will), try another approach

@dont @jeffrapp
Jeff, you said what I was thinking. Don, I hope this works for you, I really do, but as Jeff said, try to not get your hopes up too high. There are very very very few things such as this that pan out for PN. I'd advise against putting up much $$$ up front. Get them to give you a trial run first. If they are on the up and up they should not see any problem with doing this.

All of that said, I wish you good luck! Hank

The wording is actually "FDA cleared" and "covered by Medicare and major insurance" is on Dr. Harper's website and also on the distributor's website. There is another one of these centers in Minneapolis. ENFD punch biopsy validated for success. Here is the distributor website Dr. Johnson: I am not yet permitted to put links on here so look up drJusa.com

@dont and others...
What does 'FDA cleared' mean? --- Class II and Class I medical devices are usually "cleared" by the FDA, which means the manufacturer can demonstrate that their product is "substantially equivalent to another (similar) legally marketed device" that already has FDA clearance or approval. Those already-cleared products are called a predicate.

Hope it works for you but I'm a bit skeptical.

Good but scary Netflix documentary about FDA approval of medical devices. The Bleeding Edge. It is eye opening.

Hi Don, wow, that sounds very interesting! I hope you get to try it and that it works! Keep us posted on the results of your lab tests. All the best, Sunnyflower

Thx John. After reading your post I had to know what FDA "approved" means. Here is what I found, FDA "approved" means "the agency has determined that the benefits of the product outweigh the known risks for the intended use." Warm regards, Sunnyflower