Finally, a diagnosis
 

I am 44yo male in relatively good health. 4 months ago I started experiencing horrific 10/10 painful electric episodes in my right calf (felt like all of a sudden I was shocked with 10,000 volts). They all lasted between 2-5 seconds and left me crying in shock. I went to the ER and they could do nothing to help me.
This was all out of the blue. Then came spams, twitching all over my legs, pins and needles, tingling, heat sensation, with continued electric shocks. I was terrified, depressed, scared, and nobody (not even 2 neurologists) could figure out why I was getting these shocks. I was put on Gabapentin which definitely made the episodes more tolerable.

Three months of testing: 2 MRIs of the spine, an EMG, 2 ultrasounds, a vascular ultrasound, over 50 lab tests, x rays, MRI of the leg, and NOTHING. Nobody could tell me anything. Only after 3 months I requested that they do a punch biopsy after reading about it on this forum. The biopsy came back with severe reduction of epidermal nerve density. After 3 months of anxiety, finally a diagnosis of Small Fiber Neuropathy.

How is it, if this condition is suffered by so many people. that neurologists don't seem to have a plan to test for it or even explain it? I am baffled. I was told to live taking Gabapentin and get used to my new life.

I am however determined to understand WHY this happened to me. I started with understanding my glucose (no doctor ever suggested this). I discovered that my baseline fasting glucose was 120 (even with a stellar H1C). In the last week, I started a diet of avoiding carbs and sugary treats and was able to get my fasting glucose to 90. But my symptoms all over my legs remain. I am hopeful that over time, with diet and exercise, my small fiber nerves can heal (read a study suggesting this can actually happen).

I want to tell everyone with SFN or experiencing these symptoms, you are not alone, be your own advocate with your doctors, and push hard to get answers. It shocks me that so far my doctors don't seem to have a plan for understanding what caused the SFN, only a plan to manage the pain. This is not right in my view, so we need to take charge as patients.

Best of luck to everyone.

Welcome caribe. :Wave-Hello:

OP: There is a reason(s) for the neuropathy to hit us. There is a lot of info in the PN forum and I've posted a lot there over the years. I deal with neuropathy from hip replacement surgery 10 yrs ago and FOR ME doctors don't work, more info here than you'll ever get from an MD.

Hi caribe

Welcome to NeuroTalk :). The Search option(https://www.neurotalk.org/search.php) may be help you to find information here.

You may be at risk of developing Type 2 diabetes. This is worth discussing with your doctor.

9 Tips To Lower Your A1c Level

Best wishes.