Thread: Diagnosis and another question
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Old 08-29-2009, 09:52 PM
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Location: mo
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Default Diagnosis and another question
Erin,
I am surprised too. I don't know if they will change it after the EMG testing or not.

Gosh Erin I just can't imagine a month in bed. You have certainly had a long road but you are such an inspiration and I know your experince has helped so many others including myself.

No I'm not on pred or anything else. I think it is going to be a month or so before they start me on Mestinon. They want to wait until all the tests are done. Is that standard procedure? I guess I assumed that once i went on wed i would start medication. I have not felt bad the last couple of days. I have had more energy than I've had for several weeks.

On another note, did you get the email I sent you last night? My computer is acting wierd and I think I may be losing things into cyber space. Part of it may be the user but I think the computer is partly to blame LOL!
Kendra



Quote:
Originally Posted by erinhermes View Post
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
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