Small Fiber Neuropathy (Non-length Dependent)
Diagnosed through symptoms and skin biopsies. Not sure how far along I am based on what I call my episodes/ attacks. Maybe someone has an idea. Initially, I'd awake in the night with my scalp, face, neck, shoulders, back, chest, abdomen, and thighs, all burning, itching, prickly feeling and shocks. My skin would be red and feel like goose bumps on my abdomen. It drives me crazy. I use Neutrogena gel cream which is cooling and also, cold compresses from the freezer. The neurologist prescribed Gabapentin, but I don't take it. I want to know the cause and not just treat the symptoms. Had the SCN9A gene checked - negative. He ordered a number of blood tests, of which my ANA results were positive. It is not the first time that it has been positive. However, the rheumatologist wasn't concerned since I didn't have symptoms of the various autoimmune diseases. I also have POTS since Covid last year. Wore a heart monitor for a month - no issues. My attacks also happen during showers, coming in out of the cold, or just being cold. They are happening more and more during the daytime, not always my entire body and out of the blue. I am now seeing an osteopathic, functional medicine doctor. We work together on getting to the autoimmune cause. Still testing the gut, since I've had a number of ongoing issues there. Since October, I've logged 58 episodes. They last anywhere from 15 to 30 min., one lasting an hour. I don't log facial tingling by itself or getting zapped in the leg or side. Sometimes, it can occur off and on for most of the day (a couple of times). I've developed ongoing heel pain on one foot. Just the other evening, every step I took it felt like I was getting zapped in the other foot. Fun times! So, my question is ... is this an early stage and can I expect things to get worse. Hoping to treat the cause soon and head it off at the pass, regenerating the nerves.
Appreciate any comments.
Marilyn