After being barely able to walk into work today, my boss told me they need a detailed recovery plan/timeline. I told him that my neurologist is a neuro-musclular expert, but that I have a rare disease (SPS+MG) that most doctors don't see and she's only seen a few cases of the SPS. I said she's a good doctor, but playing it by ear and may not be able to give him what he's looking for.

I was hoping that would end the conversation, but his next question is where would I go to get the recovery plan he's looking for as "there has to be an end in sight." At a loss, I said the only place they've done extensive research on SPS (besides the expert whose currently out of the country) is Mayo. If my doctor can't provide what he wants, he's now expecting me to get an eval from Mayo, which may not be a bad idea, but still isn't really his business. How much should I be providing them?

The good news, out of this, is that once Mayo heard my case history and situation they were willing to fit me in in pretty short order. But I still need to okay it with my neuro and figure out how I'm going to get there and stay for all the testing, etc.

My neuro is trying to get me in for PLEX in the next few days. I ended up spending 6 hours in the ER hoping to get admitted sooner, but gave up and went home when someone came out and changed the wait time on the white board from 8 to 10 hours...pretty much everyone was angry as they weren't sending people away or telling them how long the actual wait would be. I'm hoping this works as the last two months has been a downward slide and my office thought this surgery would be a cure-all, even though I tried to tell them it wasn't that simple. I'm having trouble dealing with it myself.