HI Annie. I haven't been on this site for a long time. JUst tyring to figure out what your diagnosis are? You have MG. Do you also have DM or PM? I ask because I have MG and Dermatamyositis and have never talked to anyone else who had both disorders. I also have COPD/Asthma and more..so 'they' tell me. All I know is my breathing is really bad. I do not have ILD yet! I've been in teh hosptial six times in a little over a year. Just finished five days of IVIG treatment. My neuro is very pro active when I'm sick. He puts me i the hosptial and that forces all the other Docs to come in and treat me as well. They actually have to communicate. I see my Rheumy tomorrow. She hasn't been to the hospital much ot my amazement! She recently put me on Methotrexate. I take 24 drugs now. Not all are agreeing with me. I just don't know for sure which ones are wrecking my stomach. I'm going to see a rheumy at JOhns Hopkins Myositis Center in May. All my other docts have said I have to get my DM under control. My Neuro wants my MG under control. I just want to feel like a normal human! Hope to hear from you.
Ellen
Quote:
Originally Posted by Annie59
I got the copy of the last swallow results. This was done in Oct. of 08. I never asked for a copy as they did the smiley face thing and suggested there was only something that could be nothing but a testing problem. I thought this meant they didnt find anything. The referred me to a swallow therapist but I was so sick at the time I was having to decide what appointments were priority. This was not based on how dissmissive they were. I knew there would be tips but I already had developed methods to swallow better.
This is the result: No evidence of aspiration. Intermittant mild penetration with thin barium.
This makes sense to me now as the thicker the better for me. It is always the water, the soda that makes me choke. I was on mestinon for that test infact far more than I am now as that several months I had no problem with 60mg 3-4 times a say.
Any comments on this would be appreciated. I have this test scheduled again plus the MRI of my thoat from my city ENT. He did a scope down my thoat in his office induding having me make sounds to see what happened. He orded further testing and asked if the Univeristy had evaluated me for ALS.
Annie59
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