Quote:
Originally Posted by alice md
This is a question that really bothers me. how many patients do live a normal life with MG? and by normal I mean real normal.
Because it makes a big difference, if people like me are a very small minority- a very rare extreme of a relatively rare illness, and then it is very hard trying to convince of the importance of finding better treatment approaches, or if most people with MG are like that.
I am not sure any one has the answer. I am also not sure that there aren't many more patients with MG like me (and Chloe Atkin's book made me think it ever more) that don't even know they have MG as this is not even considered, or that their MG is "ruled out" even if it is suspected.
alice
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After I had my test, my husband was in there with me, he asked the doctor who gave the test how will this affect me if it came back positive. He said, " she can live a normal life as always. I have patients that still play football, baseball, and their life has not changed." They are better than I am or either I am more of a whimp. Going to work everyday is just about all I can do. Cooking supper, cleaning, etc before bedtime is out. That certainly isn't the normal life I had before. I ask the same question, what is normal. I missed the boat somewhere.
Desert Flower. I can relate to your post. Something has got to change. I'm tired of being tired and trying to find a better outlet. I'm just tired of people at work thinking "get over it." By gosh, I am trying and heaven forbid don't even think about saying "I am really tired today." Anyway, everyone try to have a good day today and take care of yourself. busy