Talked myself into a corner
 

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. :hug::hug:

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

Mike - plex
 

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!!!!!! :hug:

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?

I had plasma exchange last year. My procedure was preformed on an outpatient basis at the hospital - two treatments a week for six weeks. The way they did mine was through the viens in my arms. The needles were rather big but they gave me a numbing lotion to put on my arms before I left home so that by the time they were ready to insert the needles it didn't hurt too much.

They took blood from one arm, ran it through the machine and the blood was reinserted in my other arm. The machine was beside me so I did not see what was going on and they placed a couple of very warm blankets on me to keep me warm and help the blood flood easier. All in all the procedure wasn't too bad. It lasted about 45 minutes and the only thing I felt afterward was that I was very weak the rest of the day.

It did not help me at all, a total waste of time and money. It was a last resort try because five IVIG treatments also did nothing to help me. I guess the reason is because I have MG and SPS no one knows what will help SPS because it is so rare.

Good luck with your results.

Becky
Southern Bell
:grouphug:

Dear Backward
 

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.

I'm sorry to hear it didn't help. I've been doing the IVIG every month, but wondering whether it help. I think I get MG benefits from it, but its hard to tell with the SPS being so bad. I do get benefits from the PLEX for SPS, but they're short lived and it starts to come back after about a month. My neuro is considering leaving the line in and doing a maintenance treatment every few weeks, but then there is the issue of infections to worry about. Unfortunately, the veins in my arms won't support doing it without a central line.

I think that you are right about the IVIG treatment helping your MG symptoms more than the SPS symptoms. I'm sorry your viens can't handle the needles, I'm so thankful that I have very good viens because when they told me the alternate was placing a line in my neck I was ready to run for the doors. I would not be able to handle having a needle inserted in my neck and having to leave it there for any amount of time. And like you said the possibility of infection was a big issue. But I was also told that if the treatment worked, my viens may not be able to hold up and inserting the line would have to be done.

I hope you find a solution that works for you and that the PLEX treatment will give more relief than a few weeks. Also I do believe that getting the sleeping issue resolved will help tremendously. I know that if I don't rest I simply can't function. I hate loosing part of my day having to take a nap but between the drugs and SPS muscle stiffness I don't have a choice.

As usually - good luck.

Becky
Southern Bell

Back I hospital. Went for PLEX then had urinary problems. ER admitted me to acute ward but didn't tell neuro team. They used foley and rescheduled PLEX for thursday. MG & SPS symptoms deteriorated., but they wanted to discharge me.

I told them not until neuro team sees me. Plus neuro back in town today. They were supposed to have me on bipap last night to see if it helped neuro symptoms, but doc up here canceled it when he thought I was going home. Neighbour said I kept him up all night snoring/choking. Not sure if I'm going home today or neuro team will keep me. Would like to see if bipap helps walking.

I am so sorry you are having such a terrible hospital and PLEX experience. I hope you get to see the neuro team soon and set some relief. Try to hang in there.
kathie

It is so hard for me to hear when someone so sick can't get logical and responsive care in a hospital. Usually, they consult with the neuro on call. And sometimes pulmonologists have a sleep specialty and can help you. Do you have a pulmy yet?

I hope they will take care of the apnea issue right away, fully evaluate it and get you the appropriate type of care for it. One thing I would ask is whether or not you are getting enough oxygen while you sleep. Have they checked your overnight oximetry? Sometimes a Bi-Pap isn't enough and some people do need oxygen too.

I'm sorry you are going through so much. You sound so brave but I know how scary all of this can be. Well, not the SPS but the MG.

:hug:
Annie

I'm back home now. My doctor was swamped catching up on VA duties after her conference so she sent either the senior resident or attending, I don't remember which he said. He seemed good, though. He expected me to be much weaker and said that I walked, well. Then when I looked at him like he was from mars as I took my 3 inch step, he corrected himself and said I was walked better than the Parkinson's patients he works with every day, as they are unable to get their feet off the floor at all.

He concluded that except for my eyes, the MG is under control and the main problem now is SPS. That wasn't really news to me since that what led me to research conditions other than MG in the first place.

Anyway, he conceded that there was nothing more they could do for me as an inpatient. Its unfortunate I couldn't see if a good night's sleep would help the SPS, but they couldn't justify keeping me for BiPAP and I'm already scheduled to get more PLEX outpatient.

Next week I go back for PLEX, urology, BiPaP followup, and the consult with the spasticity expert. Of course they all work on different days and I live 75 miles away :rolleyes:

Hopefully things are uphill from here. I was hoping they'd try stronger muscle relaxants or something in the meantime, plus get the BiPAP going early to test and see if it helps, but it doesn't look like they want to do that. My neighbor told his nurse they put him next to a jet engine when he thought I was asleep, so that can't be healthy. Once I'm on BiPAP and whatever the spasticity doc wants me to do, I think things should start to improve, though.

Sorry so tough for you, hope thing improve soon.

There was miscommunication all around this time. The acute team admitted me because I'm so complicated. Then they neglected to inform the neuro team that I was even in the hospital. They didn't even call down as my neuro symptoms got bad, even though thats why they admitted me in the first place. My neuro told them the day after I was supposed to be be discharged because I emailed her the situation when they decided to keep me another night for observation. I'd also been telling every doc left and right that I'd been diagnosed with apnea, but it wasn't until the last night that one of the docs suggested trying the BiPAP machine, but then that never happened.

My neighbor said I kept him up all night snoring and choking. I apologized, but he said he heard me arguing with the doctors and nurses about getting the BiPAP so he know I couldn't haven't have done anything about it, sounds like he was more worried about me than anything else. Except he did tell his nurse that they put him in the same room as a jet engine :(

I was right outside the nurses station, so they must have heard it if it was as bad as he claimed. I've got all my consults lined up for next week, including the follow-up from the second sleep study with BiPAP; so I'm really trying to stay positive and hope things improve, but as things drag on its getting really hard.

What really annoyed me though, was one of the residents on the last day told me I'd been there too long for a simple urinary retention issue and unless the neuro team had some kind of "magic trick" to improve my walking, I'd need to leave today. In hindsight I should have complained; she could have simply told me I was on the wrong ward and the neuro team would be by to evaluate me as to whether they could help me or treat me as an outpatient. :mad:

I had similar type experience at hospital, doctors and residents acting more like the three stooges. When i realize that is going on, I have learned to just get away from those people because no amount of complaining will ever get them to admit they are not the brilliant and amazing doctors they think they are!

Good luck finding some more competent assistance.

Very sad and true.

My time on the neuro ward has actually been very good. They have patients that come back every month for IVIG, so they realize things can become chronic. The acute ward just seemed clueless. They first said they don't keep people for urinary retention, but I'm too complex to send home--if thats the case, then call or consult the doctors who've been treating me!

Then the neuro symptoms got bad and they ignored them and told me I was ready to go. When I told the nurse i wasn't leaving without seeing a neurologist, they brought up the acute doctor on call (who was probably the only competent one of the bunch), who said they'd never let a patient go in that condition and I'd see a neurologist in the morning. My nurse at the time said I shouldn't be too concerned about the walking, all I'd need is a couple weeks of physical therapy and I'd be good as new.

I found it a little comical that my neighbor was brought in and could walk, but with a little difficulty, yet they put a high fall risk sign on the door for him and made sure he had a walker. Yet I was barely moving, but because the issue I was brought in for had nothing to do with my legs, they didn't bother getting me a walker or declaring me a fall risk (I don't like being called one as it means all sorts of restrictions, but between the two of us, the odds of my falling were greater).

I did manage to snag a walker with the help of a nurse from the next station as she saw me stumbling between wall railings and told me to wait where I was while she located one--so I think I was just in a bad section in general.

At least now I know if I'm ever admitted again I need to ask if they can place me on the neuro floor (or at least make sure the neuro team knows I'm there and makes arrangements for me. I just assumed that my normal team would be contacted--especially since I considered the bladder problem a neuro issue to start with).

I think the acute team was annoyed that I was still there the next morning after they had discharged me, which is why the resident with the snooty attitude came in. I'm debating complaining to my neuro about the whole experience--I never wanted to be readmitted, but once I was they should have treated me properly.

One last anecdote. The nurse I had the night nurse assigned to me saw I had all these chronic illnesses and asked how I was dealing with them the first night I was in--I started to talk with her, not realizing she had an agenda. Then she asked if I was getting any help from religion. I told her that I wasn't a very religious person anymore and she went into a spiel about how I wouldn't get better if I didn't believe and let G-d in, then asked if she could send up someone I could talk to.

I don't like people prying into my business like this to start with, but put up with it if its someone close to me like family or my home-infusion nurse (who may as well be family and credits G-d with saving her life when she had cancer that should have been fatal), but I played dumb here and asked if I could speak with a psychologist. She said, "No, I mean can I send up someone to talk to you about religious counseling." I first started to say no, then said, "Alright, could you send a rabbi up to speak with me." At this point she seemed taken aback and said she'd see what she could do. She never called for the rabbi, or brought up religion again. I guess if I wasn't going to pray to the right god, she wasn't going to help me find religion again. :rolleyes:

Sounds like you are getting all kinds of attention.........
(Some better than others.)
I hope you get better.