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Myositis Message Board


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It is so discouraging to have pain and weakness and no answers. I bet you know in your heart you know what you have. It just has to be proven. I myself had the biopsies done, and there were only a few inflamed muscle fibers, so I had one doctor (neuro) in Chicago say I do not know if I believe you have myositis. I am like, well lets see I can not climb stairs at all, or curbs, I have a hard time getting out of chairs, or off the floor. I could not believe it. But again it was because my cpk was not c oming back postive. Had emg also done which showed some abnomalitis. But still not enough. Got home to my normal neuro and she did another round of blood tests which came back with an elevated cpk level of only around 380 but still high. So then and only then did my rhuemy agree that I had myositis. Mine they say is autoimmune caused. I myself believe it is dermamytois because of the rashes I had before I ever went in for help also allergic to the sun. But it makes no difference of what they name it, as long as they are treating it. But I do have quite a few other autoimmune diseases, so symptoms cross over including the Hashimotos thyroiditis like you have. But I do understand your frustration. Just do not ever give up.





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