Length dependent SFN

Have you seen this discussion started by @julbpat? Wondering if it might be helpful to learn what she has shared.

-- Tegretol for Length-Dependent Small Fiber Neuropathy:
https://connect.mayoclinic.org/discussion/tegretol-for-length-dependent-small-fiber-neuropathy/

High B6 is related to the development of peripheral neuropathy
most supplements have ridiculously high amounts of B6 so very much more than the RDA and most of us can get our RDA in foods

Glad you have a specific diagnosis. I have exactly the same. I tend to go through periods of not commenting on the Forum, because I hate to give endless negative advice. My first symptoms, pain in my feet, started 9 years ago. It took seven more years to get the correct diagnosis of SFN. So you are way ahead of the game.
One thing I feel confident saying - you will be better at putting this puzzle together than any physician. I try to gather all the facts, then talk to the doctor who helps me the most - at UAB, two hours away. I use my local neurologist for prescriptions and physical therapy referrals, local imaging orders, etc. I realize that he is never going to put the puzzle pieces together.
Even though your symptoms came on suddenly, and may indeed be related to the medication, I encourage you to think long and hard about the past ten years or so. Any odd medical things? Any unexplained pain, like muscle soreness that was excessive related to your activity? This will help you decide if the medication was truly the cause, or maybe just a coincidence.
Also start using Google to read research articles. I tend to find articles from NIH. I don’t try to understand all of the research, but just see if anything jumps out at me. Again, no one else is going to do thorough research for you. But they might appreciate a legit research article that you have found.
My SFN is idiopathic. My sister and I both have the same symptoms, although mine is worse. She has not been to a doctor about it, or had testing. Genetic screening at Hudson Alpha, which is here in Huntsville, was negative. I continue to get worse.
Whew, that’s all for now!

Oh also, I also see a pain doctor. I started that game long before any diagnosis. I take Percocet 7.5 mg 1/2 tab three times a day. Even with Tegretol, I’m never pain free, and that gives me a little break before the pain escalates. I’m pretty active (well, not compared to the old me) and pain relief is good.

Thank you. I am trying to get back to doing things I used to, but I feel like I'm in an alien body. The pain clinic is where I had the nerve biopsy. I go back in a month, so we'll see what they can do. I also have degenerative arthritis and osteoporosis (new to me!). Before the burning started, I was hiking, biking, and yoga. I was a yoga instructor for awhile. I miss it all.

I appreciate everything you are telling me! I actually have been doing what you're advising! Reading articles from NIH and skimming lots of others. I suspected I had SFN months ago, but my neurologist really thought I had central sensitization syndrome. It made me doubt myself. I will never do that again. The rheumatologist that I saw at the end of August for the first time is
the one who ordered the biopsy. I see him in 2 weeks and hope he can run a few more tests. My sister has restless leg syndrome and some neuropathy in her feet.

I have the same diagnosis.
I have posted the following on several threads on this forum, not to defend the medical providers, but to try to steer people clear of anger and helplessness, which are counter productive to feeling better.
In my experience, and with my knowledge (I am a retired MD), I find most of my own providers are generally helpful and knowledgeable. This is a very frustrating disease (for the patient and the professionals).
My type of PN is idiopathic, which means the cause is unknown, and not for lack of trying. 40% of patients with small fiber PN are idiopathic. This simply reflects the current state of medical knowledge about this disease. It is generally not because of ignorance or lack of effort. There certainly is a cause; it's just that that cause or causes have not been discovered yet. It will be in the future. Who knows when?
I believe a comprehensive list of tests has been published by Dr. Oaklander of Mass General. Perhaps you will feel more confident if you download the list and discuss it with your neurologist or PCP.

I should add that not all the tests in the list may be thought necessary in your individual case.

I just realized I said my test was at the end of November, when I meant September. I appreciate all of the helpful advice I've received.

I had SFN which was a side effect of Rosuvastatin. I was on it just 5 1/2 months. After being OFF Rosuvastatin
, it took about another 5-6 months for my nerves to heal as my Boston neurologist said they would! I’m finally back to normal!
While experiencing the symptoms of SFN, I thought I’d never get better! Lots of blood work, tests and nerve conduction studies to determine that I indeed had SFN.