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.

If you are going to the Mayo in Roschester Mn. there are people on line who rent out rooms for a very nominal cost. I am not sure about this in other states, like Jacksonville Fl. This is what I did, as I could not afford the week long stay I had for testing. Mayo is a wonderful facility, if anyone can help you they can. I wish you all the best. Look on line for Lodging for patients at Mayo clinic. Ginnie

I had the first PLEX treatment on Friday and got out of the hospital over the weekend. I still have a lot of back pain, but the stiffness is much better as I'm able to walk now. It was starting to come back today, but I had the second treatment, so hopefully it will last as they do more treatments.

I was able to keep the BiPAP test last night. That was probably the first good nights sleep I can remember having, so I'm hoping that will be at least partially helpful--its another week until my followup, though. My ENT wants to reduce my turbinates as he thinks that it'll help the BiPAP work better and help with breathing in general--has anyone had this procedure done? I'm a little afraid of it since reading stuff on Empty Nose Syndrome, but I've also read that that's a thing of the past and they've learned how to do it better. I'm having a lot of trouble breathing and I'm not sure if its an autoimmune thing or just a coincidence. I'm sure the MG isn't helping through.

I noticed someone mentioned that they had the PLEX line placed in their neck. At least in Maryland, there are two different departments who can place the line. Interventional Radiology will put it in the chest and this works much better. The other department (can't remember which one) will put a pick line in either the neck or groin, but you can't go home with it and it is supposedly very uncomfortable. I was told, if possible, to always have it done through interventional radiology.

I'm planning, at some point, to go out there, if they can't get this under control. The new specialist that my neuro wants to send me to is a spinal injury specialist who sees a lot of spastic patients. He's reviewing my file to determine whether he thinks he can help me before setting up an appointment. If he'll see me, I'll put off the appointment in Rochester. If not, I'll have to figure out what to do. My neuro told me her goal is not just to treat the disease (as she could put me on high enough doses of benzos to do that), but to help keep me a functioning member of society.

She said he works with Balcofen pumps and other devices that she doesn't deal with as often as an MG specialist, so I'm hopeful that there are things available she hasn't tried yet.