My story is to long and complicated to tell here, but I will say. I have Polymyositis and Scleraderma at the time I was diagnoised with 2 nd degree muscle failure also. I was with in about 21 days of dying when I admitted myself to the hospital becasue doctors were not listening to me. I had been saying for weeks something was wrong with me and no one would listen. I had just had a baby and they blamed it on that.
But I would like to say only you know your body and if you think something is wrong you should not stop until someone listens to you. I am doing ok now. I with Gods help even my doctors say it was a Miracle. I live a basiclly normal life. I won't be running any Marathons or winning the Fast Pitch .........so sports are out. but I have my children which I was able to raise and I have my grandchildren. SO life is good.
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What does your CPK number stay at now?? I have Polymyositis, take Metotrexate and mine stays around 150 or so. Dr says as long as its below about 175 it is considered not active? I was finally diagnosed end of 06 and it took 5 specialists almost a year to do it. In the meantime, I went without meds and continued to get worse. I am much worse now than I was in 06 when I was diagnosed. I cant go up stairs now at all, cant get out of the seats at church or the movies, and have to be very careful about falling. Just wondering if you have any issues like this? I am at my end and dont know what to try. My insurance wont pay for physical therapy anymore because I didnt show enough improvement for them to think it was beneficial. Any suggestions are welcome.
February 27, 2012 - 2:33pmThis Comment
Wow, Anonymous. Thank you for sharing! If you can, we would love for you to share your complete story with us-- you may be helping someone in a similar situation.
Best Wishes and glad to hear you are well!
Rosa
January 11, 2012 - 6:05amThis Comment