Member
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Join Date: Dec 2010
Posts: 166
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Member
Join Date: Dec 2010
Posts: 166
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No tiara! I refused to even celebrate. No nothin'. Maybe at another time...who knows!
Such helpful information...I did not know Mestinon could cause asthma! And I agree Mestinon and IVIG alone are no longer cutting it for me. I am going to ask neuro about plasmapheresis. I wish he would consider thymectomy. I dont' want more drugs.
I totally overdid it the other night. The problem is I am primarily bedridden so overdoing it means doing just a little. I went to a church event and was in a folding chair or walking around a little for about 3 hours. The next day I was in so much excruciating pain I could not even walk to the bathroom. I was so weak I couldn't even hold my head up while on the toilet, my hubby had to stand in front of me so I could lean my head on his stomach while peeing, lol!
I have to have all of my body supported just about at all times. I mean I can get up for a little bit but not more than like, 1/2 hour max. I can't support my upper body. This really bites.
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