Looking to connect with people who have non-diabetic neuropathy

Neuropathy has a wide spectrum, and in my experience, neurologists are the doctors best equipped to diagnose and possibly offer treatment. My Rhode Island neurologist, teaching at Brown University sought a second opinion from her neurologist colleague at Massachusetts General in Boston. They both settled on an autoimmune cause for my neuropathy, based on a number of blood tests, EMG’s, a spinal tap, and a nerve biopsy. I had to be willing to go through those tests and okay their recommendation for iVIG infusions to reduce nerve inflammation. It has also reduced pain, and added to range of motion and strength. There is support here, and support groups through the Foundation for Peripheral Neuropathy, and the Western Neuropathy Association. So, you do not have to be alone in this struggle. That has helped me, and I hope it will help you.

Thank you for the encouraging words that is so beautiful to hear, but if I may ask a question what kind of infusion did you have? I guess I am asking what did it consist of if you don’t mind sharing.

I had an immunoglobulin infusion, based on my weight. The infusions are for 5 days, 3 hours a day, once a month. They are preceded by a 10 minute Benadryl IV, to block any allergic reaction. That makes me sleep for the first hour. Basically painless throughout.
I hope this helps.

I was diagnosed using leg biopsies with small fiber idiopathic neuropathy and do not have diabetes.

Hi @hankinbc, Welcome to Connect. I also have idiopathic small fiber peripheral neuropathy and do not have diabetes although I have been pre-diabetic for many years. You might find the following discussion helpful:
-- Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/.

Are you on any pain medications for your neuropathy or do you only have numbness?

I am non diabetic and have Idiopathic Chronic Axonal Polyneuropathy. I am currently using Medical Marijuana capsules and Tylenol Arthritis for nerve pain. Am very leery of staring Cymbalta, Tramadol, Neurontin, or Lyrica due to side effects as very sensitive to medications.