I have a question for yall, my ivig schedule has been off with the holidays and all, and I have been going longer than my normal 2 weeks in between infusions.. with the business of the holidays plus that I am having a bit of an exacerbation.. everything is becoming "floppy again" eyes are drooping way in my way, double vision etc.. but the worst is the breathing.... I can still talk and read to my kids without being short of breath (like i was when i was admitted a little over a year ago), but I'm still short of breath, especially at night..
When at rest or lying flat sleeping, it's like I don't inhale enough.. with MG is it usually exhaling or inhaling that is more bothersome?? Once I rest even for ten minutes everything improves again. I am thinking I may need to go get another loading dose of IVIG or something soon, as this is worrying me!

For me, it is inhaling that is difficult. I think the exhaling is more automatic. If I am lying down and not using my cpap, it feels like all the gravity in the world is pressing on my chest and I can't inhale to get any air. Fortunately, this only happens if I am having an exacerbation of the mg. I find if I sit up and lean forward when having the problem, it definately helps with inhaling and after 10-15 minutes, things seem to settle down.

I would try to get my ivig as soon as possible. I go every 2 weeks and when I try to stretch it out to 3, I start having problems.

Good luck!

There are muscles that help you inhale or exhale. MIP or MEP can both be bad or just one when MG gets worse.

If your breathing is this bad, you need to get help. Don't wait, ok?

Annie

Thank yall..
Juanitad- when my symptoms get bad (last year when I got admitted and this past week - though I am better by a lot now).. i feel like I have an elephant sitting my chest, its unbearable!! When I was admitted last year, I felt like I coiudln't get air in or out.., it was really anxiety provoking.. I kept thinking it was in my head.. and HOPED it was in my head!!! But unfortunately wasn't..

Annie- I was afraid I was looking at a trip to the hospital.. My breathing was getting worse and all my muscles floppy.. like a year ago, jello fingers and knees etc.. My eyelids were both totally in my vision, so I have to tilt my head back... I slept a bunch and rested yesterday and last night and seem to be MUCH better.. thank goodness.. though still floppier than I prefer! I have IVIG on Monday.. I think I have to stick to every 2 weeks (we have been trying to stretch it out to every 3.. but that obviously isnt' working!!) It was nice having extra days each month the last several months, ivig every 2 weeks is pretty time intensive when I have to be infused so slowly.. but hey, being intubated in the hospital is more so.. soooo for now I'm just thankful something works!!

I just cut down to every three weeks a couple months ago and I ended up in crisis after Christmas. I got discharged two days ago. It sucked. I also put IVIG off for a week so I didn't have to go in the week before Christmas.

I have more trouble exhaling. It's kind of weird. I feel like my chest stays inflated and I can't get the air out. I learned when I'm really having trouble to force it all out as hard as I can now and again to expel the Co2.

Exhaling at rest (unless done against resistance) is mostly passive and requires very little muscle strength.

http://oac.med.jhmi.edu/res_phys/Enc...lesOfResp.HTML

If you are having trouble exhaling to that extent, I would think that you also have some other problem (such as asthma) which narrows your trachea or bronchi. This could also make your MG worse (as your muscles have to work harder to breath). Did any one look at that?

Also, the way to decrease CO2 is by breathing as fast and deep as possible. Not a maneuver I would suggest for an MG patient with an impending crisis.