Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 02-08-2015, 03:53 PM #11
anon6618
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Quote:
Originally Posted by AnnieB3 View Post
If your breathing is fluctuating that much, that is very concerning.
I thought this was part of MG, do you recognise it?
My other muscles get affected in this fluctuating way too. An example:
11.30 am I walk the stairs at home. Face looks quite normal, and I can even take some milk or eat some peanuts without problems.
2.00 pm I can't even sit up straight, let alone stand or walk. My eyes are both closed, and communication is almost impossible due to not being able to talk, write or even type a message. Breathing is so difficult I just lay there.
(It's not only when I've done something to tire the muscles)

The test I was talking about is indeed a spirometer. No idea what atelcatasis is, going to google this. My ladt x-ray has been a few years, guess it was 2011.
My breathing isn't stable, I mean I can't do much mostly due to these problems. Weak face, hands, legs etc I can manage because I have so many things like a wheelchair and stuff. The breathing has influence on a whole other level, if the breathing isn't right, nothing is.
Problem is, this isn't all the time.
Anyway, thanks to you guys I have an appointment soon for a bunch of tests (feb 25 or 26 top of my head)
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Old 10-24-2020, 09:01 AM #12
Sculptor44 Sculptor44 is offline
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Sculptor44 Sculptor44 is offline
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Default Competent doctor needed!

Pretty desperate here in Iowa. I passed a test for overnight oxygen May 31. Near end of October and my pulmonologist still hasn’t ordered. My medical supplier tried to help this week as they don’t get why it’s not being done. Part of the problem is being diagnosed by half my doctors as Myasthenia and half not. I have a great pulmo at Mayo I last saw in 2016 but problematic for my daughter in the midst of Covid to get me up there. Had a better pulmo who first sent me to Mayo in 2008 but he moved to Colorado. I also test positive for mitochondrial disease by biopsy at Mayo and have brain lesions and some indication of Lupus. Not diagnosed with Lupus. At ER in August I thankfully got 125 shot steroid as breathing so bad. This is a lot. Not addressing my body issues. I miss my family.
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