UMD is where I currently go, and they are great for MG...they've gotten everything under control except my eyes in terms of strength, but I think my eyes may be SPS related. There's not many places to go where they have SPS experts since its so rare.

Hopkins has an SPS expert on staff, but she's currently in Oxford because her NIH funding ran out and the UK apparently cares are rare diseases.

In the end, I decided to go the Mayo route. I could have gotten into Cleveland next week, but it would have been with their newest doctor, who switched from neuro-cardiology to neuro-muscular when he moved to the states and I'm already seeing two experienced neuro-muscular doctors so it just didn't seem like the right fit.

I'm sure he would have been an excellent doctor. Someone that can learn Neuro-cardiology in China and then pick up neuro-muscular at UPenn has so be smart, but I just didn't feel comfortable. Especially since he spent the last few years in Allentown rather than a major research center.

Mayo set me up with the doctor who's authored most of their studies on SPS, the only catch is that it'll take a couple months to get in. Last time they called back with a cancellation in two week, maybe I'll get lucky again. The MG expert I'm seeing thought that the spasticity expert she works with could help and wanted me to see him first so I canceled my original appointment, but he works more with spinal cord injury and admitted that I didn't fit the few cases of SPS he's seen. I figured that was my cue to find someone more specialized. I don't think I lost much as they would have tried his approach first anywhow. Now I just have to decide whether to fly into Minneapolis and rent a car or drive out to Rochester from here.