Welcome to Neuro Talk. I did look up the disorder you have. I had not heard of it before. If there is a thread for it, type it in under the search bar. I know someone on this site will help you.
I did look into treatments. Has decompression of that nerve been talked about to you? I did read about the surgery that is available to certain patients. If the Cortizone injections don't help, pass on them. Someone will help you find a doctor who may have other options other than the injection. I hope that some relief can be found. ginnie