@JustinMcClanahan, @johnbishop, @ingritamoreno, and all...I just found your site and your messages by mistake and am so thankful. My son, diagnosed for 20+ years with Cervical Dystonia, is in excruciating nerve pain 24/7 from his neck through his back/left shoulder/left arm which if increased by touch or movement sends horrible electrical impulses throughout his entire body...just received a possible diagnosis of Stiff Person Syndrome. Please help me with information and links to find legitimate sources to help us understand this rare thing, its symptoms and any treatments. He has a Dilaudid pain pump that helps greatly, takes Baclofen which is also a big help, and some other meds for various issues, but how do we address this syndrome directly?

He saw a neurologist at the University of Florida, Gainesville, Fixel Movement Disorder Institute last year who first mentioned this diagnosis, with no follow-up due to her moving to California! We now consulted with a neurologist we found who suggested it may be a legitimate diagnosis and are awaiting his recommendations.

Help, please, with any current information and suggestions. You friends on Connect have helped me and guided me through some quite difficult years and illnesses. I'm praying you can do the same for my son and me now.

Blessings, Elizabeth