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Senior Member
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Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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Senior Member
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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Hey hon! I am really surprised that you were only dx'ed with ocular MG - esp given the general weakness!
I noticed that drying my hair was a problem long before my eyes started going "wonky" on me.......in fact to this day I still have days where I have problems with holding my hands above my head - my arms just get too weak. Then there are other days when I can move an entire sofa - no problem! LOL!
The only thing you can count on with MG is that you CANNOT count on anything! Every day is an adventure!
By the time I was dx'ed everything was too much for me! I spent bout a month in bed and was unable to eat, so the eye thing wasn't too bad - it was the eye PAIN that was unbearable!
I know you have answered this already, but chalk it up to my MG brain fog - are you on pred yet? It does really help! In fact, you may have a bit too much energy until your meds are where they NEED to be! @ 80 mgs, I was bouncing off the walls! After being bedbound for so long, though, I loved it!
How are you today?
Love,
Erin
Quote:
Originally Posted by dog lover
I was diagnosed on Wed. by the Neuro/Optho with Ocular MG. I think they did every eye test imaginable!!! I was a little surprised by being DXed with Ocular since I have weakness in my left arm and hand. The Dr. doesn't think that is related to the MG. I am now wondering if there is something else going on or if he is wrong. I started noticing it about 6 months ago. When I would wake up in the mornings my arm and hand felt weak and shaky. I also had a hard time when i was blow drying my hair or putting dishes up on shelves above my head. That was several months before the ptosis started and I thought maybe I was sleeping on it wrong. He is going to start me on Mestinon after the testing is all finished. I had the antibody test on Thur. and am scheduled to see a MG Neuro specialist on Oct. 1 for an EMG.
My questions is has anyone ever noticed the ptosis getting much, much worse after all the eye tests? My eye hasn't been the same since. It is so droopy that sometimes it shuts and feels like it is sticking. It takes a few seconds to get it open again. I feel like it must be related since that is when it started getting worse. I have tried ice packs and am getting plenty of sleep and nothing is helping. I am hoping it will improve again as the days go by.
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Erin
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