Quote:
Originally Posted by Stellatum
I am not diagnosed. My MRIs are normal. My blood tests are all normal--no antibodies that they can find. My SFEMG came back slightly abnormal, but not enough to diagnose me with MG. That's because the doctor only tested muscles in my legs, which are only slightly affected. He says he can't test the weak muscles in my sides and back because he doesn't have numbers for what's normal for those.
I would love to hear from anyone who has my atypical symptom: weakness in the sides and lower back that makes them tilt back and forth from the waist up when they try to walk.
Abby
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I was diagnosed using the Tensilon Test in the hospital during an exasperation in Jan. of this year by a neuro specialist. Since then, like you, my other tests are "normal".
Because of that I can't even find a neuro to treat me.
I have the trunk issues like you. It also affects my ability to hold my head up for any extended period. It also affects my respitory muscles to the point I have been intubated.
I am glad that you are being treated with Mestinon. I am on that as well as CellCept. The hosp. neuro put me on them and my PCP refills them for me.
