Small Fiber Neuropathy and Vitamin Deficiency

Mine was dxed at Cleveland clinic. History. Physical test and ski biopsies. Dx small nerve dinner sensory neuropathy. Cause not known. Pain fluctuates but need nor o 20; 2-3 times per day. Any advice?

I have been diagnosed with SFN. I have no vitamin deficiencies, but my B6 levels have been consistently high for years. I do not take any supplements with B6. All of the various doctors or practitioners I have asked about high B6 levels have dismissed it. Does anyone else have high levels, and if so, have you received any help with remedying it??

Can someone describe the pain with this type of condition?

The noritriptyline doesn’t help that much. I’m wondering if IVIG treatments will help me?
Have you had them?
Tks
Debbie

"dinner" sensory neuropathy? A typo? I just googled it. Begins (usually) in feet? I have a "red rash" it's been called, on both feet coming up like socks. I've been referred to a Neurologist, so when I get to them, I'm gonna ask to be tested for it! It's not like they're doing anything useful for my "polyneuropathy," besides Gabapentin, anyway.

I'll tell you what my rheumy said about a month ago. I have mutiple autoimmune syndromes and have been taking IvIg for almost a year. I had a positive small fiber biopsie about a year ago and increasing (and moving up legs) pain. She is treating me for Sjogren's and said to stop treatment while I was on IvIg, that it was taking care of the autoimmune symptoms. She wants me to go to a neurologist that can do a "deep muscle biopsy". I should be better, not worse. The autoimmune symptoms do seem better, however.

So are you saying that the IVIG treatments are helping your nerve pain symptoms?
Tks
Debbie

This infusion is for pain. I’m still waiting on test results for autoimmune disease . I’m running out of treatments to try!!
Tks
Debbie

Theres some evidence of some genetic differences that result in some folks storing B6 in tissues, even in the absence of taking supplements. It can also occur because of underlying conditions

I was diagnosed with small fiber neuropathy after a biopsy near my ankles by my foot doctor about 3 yrs ago. It was painful to walk. I used to be very active so I was very discouraged. I had a few other ailments from being inactive and overweight (gallbladder removal a year ago) which changed my mindset and finally started walking regularly. I had read that walking helped but didn't believe it. It did hurt at first but had become steadily better. Also changed my diet. Hardly ever eat out so a lot less salt , sugar , just whole foods. I have lost 30 lbs in last 2 years so that has probably helped too. My whole body vibrates( doing it right now), have extreme tinnitus, low thyroid hormones, etc. Walking has helped me get more balanced in more than one way. Thanks for reading and I wish you luck. Ps I have idiopathic neuropathy and thyroid cancer 20 years ago. Thyroid specialist kept me on low dose thyroid meds all that time to prevent cancer from coming back. I'm convinced that's why but he won't agree with me. Looking for new endocrinologist now. Neurologist did some tests but was not helpful. I'm learning to be politely pusher with doctors. Not easy! Thanks for reading and hope this helps somehow.