Quote:
Originally Posted by Lily7
Thank you JerzyBoy for your insight and information about what you go through. I read in another post that you are awaiting the appointment for the MG specialist -- long days those, and also that you have even more difficulty when you lay down flat. I was struggling a lot when laying down, I was trying to sleep all over the house in chairs and recliners, choking and, well, hate to say it, drooling. When I saw a pulmonary Doctor he evaluated me for sleeping disorders and said I needed a cPAP machine. Now I can sleep on my back and have no choking, etc. for the first time in over a year I sleep for more than a hour at a time. Getting some overall body rest sleeping has helped a lot.
Having said that, I am still struggling with the breathing, and the choking/swallowing that we are discussing. The pulmonary Doctor is doing further tests and may put me on an avap machine instead of a cpap. He said this would give my breathing muscles a better respite during the night and keep my co2 levels from getting too high.
It seems like it all started with my eyes, double vision, and is drifting downward in my body. Sigh.
QUOTE=JerzyBoy;1182497]I can only speak for myself and I've only had symptoms for less than an ...
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Lily7,
I just left the hospital after a crisis, and I might have a little insight to swallowing. 1st I had a Barium swallow and scope to the throat. There were no problems. For 2 more months, I told my wife that the meat she was buying at the local store must be poor quality. I have had MG for 7 years or so -on Mestinon. I had never had a crisis before.
All a once I went to lunch 1 day and couldn't drive back. Called the wife. She took me to the ER.
I knew I had been getting worse, just did not pay attention. I had a 4 plasmapherisis treatments and time in the intensive care.
I found out, that even though I couldn't tell, my MG was affecting my chewing and swallowing muscles. After my release last Friday, I have since ate the same things. Those steaks and etc were not tough at all ==It was me.
Maybe it might help to see if it is you, but you can't tell
FREDH
P.S. Maybe I will understand if it happens again