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Old 04-15-2011, 10:38 PM
teelae teelae is offline
Junior Member
 
Join Date: Apr 2011
Posts: 18
10 yr Member
teelae teelae is offline
Junior Member
 
Join Date: Apr 2011
Posts: 18
10 yr Member
Default Thank you everyone

Quote:
Originally Posted by Suddenly View Post
Hi Teelae,
I'll second what the others have said.
My search for a diagnosis started when a problem I had with an occasional "slow swallow" became more problematic. I lived with it and ignored it for a year before spending 6 months with a GI doc trying to find a cause. My GP referred me to a neurologist when all the GIs testing came back negative. She found proximal weakness and that was the game changer. She referred me to the MG specialist. Still my test results were all negative (and there were a lot of tests) so after three months with the neuro mg specialist he finally diagnosed me based on symptoms, a picture I took of myself with a droopy eyelid, and a positive response to mestinon. My chest CT showed thymic hyperplasia and I had a thymectomy in August 2010 after a round of plasmapheresis. Now I take 60mg mestinon every 4 hours and IVIG once a month. My symptoms still have a tendency to be uncontrolled. I have weakness of my arms, legs and neck but my main symptoms are swallowing problems, double vision, slurred speech and jaw fatigue. I've never had severe respiratory problems but sometimes feel more aware of my breathing and like I can't get a good deep breath. The big thing about MG is the way the symptoms come and go. Just today I've had three different periods of time when my symptoms were bad. In between I felt pretty normal. So, my problems began with the swallow.
Keep looking and don't give up! It's just so important to know what you're up against.
Thank you all of you for your very timely input. My neuro that is my second opinion is the head of the university MG clinic. HE is the one saying that if I had MG the symptoms would be varying within one day - not days apart. HE is the one saying that you cannot be positive then go negative. I am leary of all this because it so not what I have heard before and am hearing now. I have the muscle test on the 21st of the eyes and my shoulders I think. I also have a question about swallowing. When I lay on my right or left side, when I am not very upright, I have noticed that I have a feeling of my esophagus kind of like "laying on itself" in spots, if that makes any sense. It feels like the position kind of closes off the throat in areas, has any one of you guys ever experienced any feeling like that? It doesn't have to do with swallowing, just position, if I drink anything or eat anything in that position, then it will make swallowing harder. I do not know what I would do without this site. Thanks everyone.
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