Thank you John. My neuropathy symptoms started in my hands. In 2014, I was diagnosed with bilateral Thoracic Outlet Syndrome. I have had surgery for this on both sides. The surgeries didn't help, so In 2015 I had surgery to relocate the ulnar nerves in both arms. (the thought was that I had a secondary compression at the elbow causing the neuropathy.) Those surgeries were also unsuccessful. Since that time, my neuropathy has been progressing to my chest, trunk, back, buttocks, and lower extremities. I have lots pain- mainly a constant burning, but also some shooting and throbbing when I overuse my hands. (some of my issues may be a result of the surgeries that I had.) I have a lot of trouble sleeping, because the pain to my tailbone is worse with lying down. I also have difficulty sleeping on my sides due to the previous surgeries)
I went to a new pain doctor 3/2018 who did the skin biopsy which diagnosed the small fiber neuropathy. The third neurologist I went to sent the right lab tests to Washington University, and found that I had elevated IgG vs FGFR3. (this was August, 2018)
I just finished my 3rd round of IVIG last week. I have been having mixed results. My first round was for a full week at the end of August. My second round was for 2 days the second week of December, 3rd round was Jan. 10th and 11th.