I've had several people email me lately asking how I'm doing now that 2 years have passed since my treatment. The positive results I initially received only lasted about 8 months after I returned from China then they simply disappeared. For the past year or so I have felt a decline in health and ability. I now use a scooter for walks longer than a block or so, and recently bought a conversion van to get around. Standing from a chair is getting very difficult. I had to stop PT given my lousy insurance and the cost. Exercise is now difficult but I do what I can.
Would I go again? No. It seems to me that the technology for stem cell treatment in FSHD is just not there yet. Maybe it will be in my lifetime, but not yet.