Have your doctors ruled out other issues that can cause pgad? For me, it appears to be caused by nerve compression (chronic radiculopathy found at L5/S1) I have an upcoming MRI to figure out which issue I have with my spine and nerves so we can get the situation fixed. I am beginning to view pgad more as symptoms that something else is going on in my body, rather than an actual diagnosis. I know some would disagree, but, for me, this seems to be the case. Are you familiar with Dr. Irwin Goldstein’s work or have you heard any of the interviews by Dr. Robert J. Echenberg? There are some great materials that discuss the five regions which may cause the problem (end organ, pelvis/perineum, cauda equina, spinal cord, and possibly the brain) You can go to http://www.isswsh.org and click on the resources/videos to learn about this. Have you had an EMG/NCS or MRI? My understanding is that the EMG/NCS will not show small fiber neuropathy, but a punch biopsy could help with making the diagnosis.