Allison
My 15 year old daughter has been complaining of progress muscle weakness/fatigue for the past year. She is a dancer and at first I thought she was being overly dramatic. She performed in the Macy Parade this past year and ended up having some very scary things happen and the muscle weakness has been much worse since then. She is hardly able to dance anymore. She still does but has to take frequent rest every few minutes. She finally made her dance company and now she's afraid she has to quit. Not only are her muscles fatigues but she is unable to leap very high at all and struggles getting up off the floor. This is heart breaking to both of us. Her smile has become awkward but we don't recognize any occular involvement. She has had an EMG, various blood work, physical therapy and echocardiogram and all were normal. We are waiting to see if she will be accepted into the MG Clinic at UNC.
Replies
My tests are all normal, too. The doctors would have to test me during extreme muscle weakness to get a read, but fortunately I have a doctor who treats me. I could hardly sit up, breathe, chew, or swallow in November, but gradually I gained strength again. I ran the Boston Marathon on Monday (scary experience), though, of course, not at my prior level of ability. Still, I DID train slowly for and run a marathon. She can get dancing with treatment, but you have to make it a mission to find a doctor who is confident in treating seronegative patients. Good luck to you and hugs for her.
Thank you. I think we are on the right path. We live near 2 Major University Medical Centers and are trying to get into see a Dr. Howard at UNC. He has to look over her files and decide whether or not to accept her. He sent us for more bloodwork (B12 & TSH) this week before he\'ll schedule her. (Hope that\'s a good sign)