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Old 01-23-2015, 08:58 AM
anon6618
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anon6618
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Hi Annie, thanks

I did have a pulmonologist, but he stopped working due to old age so that's when I stopped going there. He was very good but I've had horrible experiences with other pulmo, so you can say I'm reluctant to try and go see one of the new guys.
Ive had these breathing problems since the beginning years ago, so I'm pretty sure testing will show something different. had one a few months ago (without pulmo)

Yeah, I've had an overnight oximetry, and probably every test possible too
I tend to have more issues during day time, weaker diaphragm.

I didn't understand what an oxygen concentrator is, but it only gives the air you breath a higher concentration of oxygen (jeez, didn't get that, even though the name pretty much says it all ) What I want, is something that -on my command- will push air into my lungs. You know, not all these weird stuff like ventilation and whatever more, just a simple thing that gives me air when I need it, without me having to actively breathing it in. Something to have in your home, and just using it when I feel it's necessary.

I'm disappointed this isn't an option. It's hard because my breathing changes so much: in a week I can go from almost no problems breathing to nearing crisis and needing to go to the ER. Everything in between. It is the most debilitating symptom I have in all my life with my many different diseases.
My main problem with "not getting what I think is good for me" is because the tests always come out differently. Well, yeah, duh! It's typically MG.
Another thing is that it just isn't normal way to treat. They rather use pills, and here they never, ever give a MG patient a bipap.

I don't have a bipap, but that's something I want most in my life right now. Or someting else that pushes air in my lungs. That's why I asked for an oxygen concentrator, I saw this was something you could buy without needing a prescription.
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