Nov 30, 2011
I have been having trouble breathing. It usually starts mildly in the afternoon. I start breathing more shallowly, as my chest starts to feel "tight". Then later it gets gradually worse. Last night it was pretty bad around 8 or so. I took off my bra. Finally at 9 I went to bed. I was going to use my inhaler but I thought, you know, if it is MG, then sleep should improve it. I got back up at 11, and I did feel much better. Fine in fact. For .. about half an hour.. then the tightness started to come back. No wheezing. Just felt like my torso is being squeezed tight. When I went to bed, I pulled pillows tight against my chest, laying on my side, with my head on 2 pillows.. but breathing was still pretty tough, so I put a pillow under my arm to raise my ribcage off the bed a bit. That helped enough that I could sleep. This has been going on for a while. Ever since I fell down the stairs 6 weeks ago.. when my symptoms came back. But it seems to be getting worse. It used to just be an annoyance, but over the last 7-10 days, I find at night that I tend to not participate in activities I would usually do.. even sedentary ones like playing video games, because it's gotten bad enough to be really distracting. I'm not usually getting dizzy though. Mostly I just breathe shallowly for a while, then gasp to get more air.. hold it for 20 seconds or so to expand my chest (uncomfortable!) and then breathe out.. then I breathe shallowly some more. I wonder if it might be good to use a nebulizer at night maybe. If it gets much worse I'm going to have to do something.
I was reading about Myasthenic Crisis and I think I've actually had those before.. maybe. It was either MC or just really bad asthma. How can you tell? If you have wheezing does that mean it has to be asthma only? I'm not sure. Sometimes I have wheezing and sometimes I don't. When I first developed asthma after an upper respiratory infection in 1988, it was really severe for around 6 years or so. I had to use an inhaler 4 x day, a corticosteriod inhaler 2x day and I was on prednisone several times. I also had several (5 or 6 I think) trips to emergency rooms/clinics. I was also treated at the doctor's office twice (most recently around 5 years ago). Once I briefly stopped breathing all together, which was very scary. I've been held for hours and many treatments at Kaiser and at ERs. I don't remember how many treatments I had at Kaiser - that was my first emergency - but I remember one ER trip I had 5 treatments of prednisone by nebulizer and they wanted to do another one, but I said no because I was shaking so hard I thought I was going to vomit. I remember Kaiser game me an EPI pen to carry around, but I never used it. I was kind of scared of using it.
So, it worries me a little that I'm having trouble breathing. But it's not as bad as I've had it before, so I want to try to just treat it with rest and xopenex for a while longer.
I wrote the Mayo Clinic last night to see if I could get an appt there. It sounds like they have a lot of experience with MG. I want to go somewhere they have seen unusual presentations of MG before, because it seems like a lot of doctors who don't have experience with it aren't aware of the various presentations of it.. just the most common one (droopy eyelid & double vision).
I am still very stoked at the possibility that I might finally get a diagnosis of something that might be curable. !!!! I can hardly comprehend all of the changes that would mean for me. I've been dealing with this so long. Since 1988 when I first turned 20. It would be... magical. Martial arts, horse jumping, roller skating, laser tag, doing my half of the cleaning at home! Doing LAUNDRY!! Being able to style my hair!! Being able to go for long walks with my dog and go on bicycle rides, being able to swim by myself without a float in my hands. .. I mean.. wow. It would be a whole new world. Please Please Please Please Please!!!!!! :-D