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.

I'm sorry you're going through such a hard time.

Which Mayo are you looking at going to? If it's MN, I can give you a bunch of tips. If it's another one, there are other people here who can help.

Don't despair! There just has to better answers than what you're getting. Rest up and start fresh tomorrow. Or the next day.

Annie

It would be the one in MN. I went ahead and made the appointment with them. They actually wanted me to come out middle of next month, but the date they gave would have spread the visit out over at least one weekend, possibly two weekends.

I had them wait about a month as I want to give my doctor a chance to get things under control and make sure she's okay with me doing this rather than making it seem like I'm doing an end-run around her. Plus they had Monday start dates this way--I realize it could still go over a weekend as they said 5-7 business days, but this just seemed to make more sense.

I hope that Mayo can help you. I guess my biggest worry is not being able to work. We have gone from having tenure to having yearly contracts and now to being employed without contracts. Basically, I could be fired instantly (as could anybody where I work). Sure, I could sue them, but what a mess. I haven't told them about my problems. I have had people comment that I am limping on occasion. I actually have lied several times telling people that they were observing and old horseback injury. If my boss cornered me up and demanded explanations like yours did, I would break down crying.

I guess that you have to figure out whether you are better off fighting the battle to stay at work or try to go on disability. I hope that you can make good decisions based on what you find out at Mayo.

I would check your company's HR policies or handbook. I do not think they have the right to ask those types of question. When I went out for surgery (the surgery that kicked off the MG), my boss did not even ask for the details, she knew she wasn't supposed to and I did not offer any details either. All the paperwork went from my doctor right to our employee health services department. The only info that she received was my expected return to work date.

In our employee handbook, it stated how long they would hold my position and after a certain time, they would only guarantee an equivalent position. I guess I am very lucky.

I hope things work out for you.

kathie

In hospital now for PLEX. Neuro said Mayo is ok but said to wait. She wants me to see spasticity expert. Thinks he'll know how to get tightness under control. Feeling hopeful again. They want me to stay at least two PLEX treatments, but would really like to keep bipap fitting appt this weekend. I think apnea is big part of puzzle. Will try to do one here and rest as outpatient if they let me.

Will try to keep you all updated.

Let me know how PLEX goes. I think that might be next for me.
Mike

HEY MIKE! I'VE HAD PLEX MANY, MANY TIMES. PAINFUL? YOU BETCHA! THEY PLACE A LINE IN MY NECK THO. AND MAY PICK ANOTHER PLACE FOR YOU!

DID IT WORK? YEP! HAD ENERGY FOR QUITE A WHILE. IT TAKES ABOUT 45 MIN PER SESSION - AND DON'T LOOK @ THE MACHINE IF BLOOD SCARES YOU - IT DOES ME - BUT IT DOES HELP! I'VE HAD ANYWHERE FROM 4 SESSIONS TO 10..JJUST REMEMBER TO BREATHE!!!!!!

Good luck, hope it is helpful and you are soon feeling better.

Erin, I hope you don't mind me asking, but if it was so helpful, why don't you have them any more?