I wanted to start this separate thread about the breathing component. I need help finding words phrases to explain, to respond to the docs around what it feels like with my breathing. All my life I have been a pretty good word person. In when I went back school there was a manditory reading class that I (thank heaven) tested out of because of my high vocabulary tho I do read slower than I wish. But words are so so hard to locate these days with the level of Brain Fog I have. I hope some of you can help but telling me how you respond to this question. The young student that was in the room at the neuro appointment was really probing me on how it felt in my chest. I pretty sure what I said, what I managed to get out wasnt good at all.

Sometimes after high activity it can actually feel like walls. Like muscles in my chest wont move. But generally I dont feel much like when I try to talk or like trying to sing my voice just stops coming out. One of the most dramatic things to me is when I did the mestinon test with my pulmo. I asked if I could do a round of pulmonary func tests before and after a dose of mestinon. I could have cried at the moment I felt my lower lungs-diaphragm area 'work.' The main thing I dont feel it anything working. Other than that I do feel myself trying to breath. I feel that it is more work, harder to get air in. My pulmo asks me if I wake at nite which no I dont really on a regular basis. But I stay up till I can breath well enough to go to bed. Even in bed now I am almost sitting up with the stack of quilts and pillows. The worse nites I pull my knees up and lean them again pillows on the side cause that helps ease my breathing alittle. Having them flat in bed does something that is not helpfull.

See all this is too much to go thru so I need more concise and I have lost that ability. I do and have tried to write it down.

Annie59 thank you all

I think your second paragraph says it all - - and very well!!

Maybe print it and hand it to whomever when this subject is discussed.

I have problems breathing at night, and I agree it is hard to describe. In my case, I, like you, cannot sleep on my back, unless I have Mestinon.

One time, I had my meds, and I was still awaken by breathing issue, but that was only one time.

There are times, when I am just lounging, not asleep, but lying on my back for an extended amount of time, and I get the breathing issues.

I would describe sleeping on my back without Mestinon much like drowning. I actually feel the muscles on one side of my lungs restricting, not able to do the back and forth motion required for lung functioning.

I think lying on my back oppose to standing/sitting is worse on the lung muscles, because I am placing more weigh on them. So, not only do you have the muscles being weakened by MG, it's weaken due to the added pressure.

In my case, it's not a lot of weight, but it is still more than it is in an upright position, and there's no compression of the muscles.

I find that sometimes it is easier for others to understand if I explain that when I am laying flat on my back and having problems breathing, it feels like all the gravity in the world is pressing down on my lungs and I can't make the muscles work to expand my lungs against the gravity pressure. See if that will help.

Breathing is worse today for a couple reasons. I am trying to take note of how that manifests and feels. I ran out of strength to talk when I was on the phone in call this morn and had to stop talking after only a couple words. I I said just a minute. I took some moments to rest and get a breath. I came back and said my breathing was worse as it was my health aid agency that had called. I was in the bathroom and had walked to answer the phone from the next room. I find myself in this place more and more Since I got worse in March and again in October. I lose the normal 'push' that gets a persons words out. I havent seen anyone remark about this particular point when your muscles get too weak to talk. Can anyone with this tell me their story?

Annie59

I often run out of air mid sentence. It is scary and embarrassing. I know what you mean about not having the push. It is happening more now that it is cold out. In a conversation, I have to keep stopping and resting then breathing then picking up where I left off in the sentence.

Yes that is it. When worse and more often these days I cant stand and talk at the same time without my voice trailing off cause the 'work' of standing is all I can do. I gues I should go back to basics. Back in 2005 when I saw the first pulmo locally, not the one now, I said I can't sing anymore. I said it just stops. It doesnt come out after a bit. This fella acted that was the oddest thing he had ever heard. But when I became involved with my first MG group I was told that was a classic MG sign, not being able to sing.

I used the word shallow with th 3nd neuro and it was a bad choice. That neuro whose specialty was autonomic dys put the shallow in his notes so they knew it was my words to imply it was obviuosly anxiety based.

Annie59