[bny806]

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!

[Juanitad]

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!

[AnnieB3]

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

[bny806]

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!!

[Tracy9]

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.

[alice md]

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.

[Tracy9]

Alice when I was just in the hospital they said some of my tests were suggestive of Pulmonary Fibrosis. The pulmonary doc wanted to do a CT scan but the hospitalist didn't think it was needed. When I looked it up online, some of the symptoms it listed were certainly familiar to me. I have a follow up coming up with my pulmonologist; so I may bring it up to him. I didn't know that about exhaling. Thanks.

[alice md]

Originally Posted by Tracy9

Alice when I was just in the hospital they said some of my tests were suggestive of Pulmonary Fibrosis. The pulmonary doc wanted to do a CT scan but the hospitalist didn't think it was needed. When I looked it up online, some of the symptoms it listed were certainly familiar to me. I have a follow up coming up with my pulmonologist; so I may bring it up to him. I didn't know that about exhaling. Thanks.

Tracy,

I am just trying to put everything together (and of course I may be wrong as I only have limited data).
Could you possibly have some hypersensitivity reaction to some environmental toxin? Which could be causing the combination of muscle weakness, pulmonary fibrosis (or some other respiratory problem)?



I know my idea sounds like a chapter from "House", but possibly worth persuing?

If it sounds unlikely or ridiculous just ignore it.

[Tracy9]

I don't know...all I know is I just don't want to have one more thing wrong with me so I want it to be from the MG! It certainly gets worse and feels better when I'm better MG wise. I smoked from 15-25 and used to get a lot of bronchitis up until I was in my 30's. I have Chronic Lyme disease, bartonella and babesia, rocky mountain spotted fever I am always fighting.

Tracy, I don't know if you use Mestinon? Because it can trigger asthmatic problems.
I always was an allergic person, but never asthmatic (although I couldn't breath when I had anafylaxic reactions of course). Since I started mestinon I got asthma as an extra Dx.
They figured it out because they already suspected it (mestinon + allergies), and ventolin and other inhalers helped me a lot.

Maybe you can ask for a test of your lungfunction, combined with the use of ventolin?

For me asthma problems cause problems with in- and exhaling, it feels totally different from MG causes weak diaphragm. The first one feels more like it's something in the lungs that just won't go, sometimes slimy or irritating, like when you've got the flu. Sometimes combined with pain or caughing.
MG diaphram weakness is (for me) being out of breath all the time, troubles breathing in, lying flat makes me sleepy in a creepy way and gives me headache (both caused by CO2 getting too high), and fysically it feels much lower, I really feel it is not in the lungs, it's a bit lower. It feels like it's too tight to inhale. I don't know if this is helpfull, but sure hope it is.