NeuroTalk Support Groups - My latest Crisis (8 years after last crisis)

I haven't been feeling well for several months. I attribute it to my ins company refusing to cover my Mestinon Timespan 180 because it is a extended release medication and they don't cover any extended release medication. So I had to take a 60mg mestinon every 3.5 hours all day and night and because it upsets my stomach, I had to eat something every time I took mestinon and I just didn't get the sleep I needed. My neuro talked to them, but they told me the 60mg would work just fine. After almost 7 months, I finally got them to cover the Timespan, but it wasn't soon enough. I took it for 3 nights, woke up Monday morning barely able to breathe, went to the ER and was immediately sent to ICU.

They didn't intubate me right away (even though the neuro hospitalist wanted to) because the intensivist (hospitalist in charge of the ICU) felt my numbers looked fine. They did start me on plasmapheresis and after 2 days, the intensivist sent me to the general floor even though I still wasn't breathing well. I was actually on the floor for 45 minutes when I stopped breathing. I felt it happen and hit the button for the nurse, but it took them several minutes to get to me. At least I think it was a few minutes, because I passed out and when the tech came to my room, I was purple. They called a Code Blue and intubated me right there in the room and sent me back to ICU. (Side note: I woke up totally paralyzed. My brain was working fine, but I couldn't move a muscle. I laid there and thought I had had a stroke and if this was how I had to live for the rest of my life, I didn't know if I wanted to live that way. I finally got my big toe to move and a nurse saw me moving my toe and came up to my head and told me the paralytic hadn't worn off yet and they hadn't given me enough medication to keep me asleep until it did wear off. I would be fine even thought it would take some time for the paralytic to wear off-it took about 2-3 hours.)

Once back in ICU, they did 2 more plasmaphersis (4 total) and my kidney's started rebelling. So they switched to IVIG. By the way, once I had been intubated for 2 days, the intensivist decided I was fine and had the tube pulled. The next morning, had to intubate me again, because I wasn't breathing properly. I never saw the intensivist again - the neuro took over and she was great. I had 5 IVIG treatments and they left the vent in for 1 more day. This time, when they pulled it, I was breathing ok. I stayed in ICU one more day and then 3 days on the general floor. I was in the hospital for a total of 15 days, 11 of them in ICU, about 8 on a vent.

One thing that did surprise me was that everyone kept commenting on the fact that it had been 8 years since my last crisis. I finally asked a nurse why everying kept commenting on that and she told me they have some MG patients who are in ICU every 2-6 months with a crisis. That made me feel fortunate that it had been 8 years for me. I'm shooting for 10 years next time. We'll see!