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Old 04-14-2011, 08:57 PM
Suddenly Suddenly is offline
Junior Member
 
Join Date: Apr 2011
Posts: 33
10 yr Member
Suddenly Suddenly is offline
Junior Member
 
Join Date: Apr 2011
Posts: 33
10 yr Member
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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.
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