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Originally Posted by Musicjunky1
I have all the symptoms of MG: Droopy eye, slurred speech, muscle weakness, numbness and tingling, muscle twitching, trouble aspirating my own saliva and drinks, tongue pulling and tired muscles under my chin when talking or chewing. I also have a heavy feeling in my arms and legs. My problem is all three blood tests came back negative as well as the EMG. I have been referred to Mayo and I am awaiting my appt. I am at wits end as they won't even try Mestinon to see if it might help or anything else for that matter. Does anyone have any suggestions? I have asked for the chest MRI and Tensilon tests but they have not been ordered because the EMG was negative. I appreciate any help you all can give.
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I know how frustrating it is not knowing what is causing your symptoms. I hope that you get an appt. with Mayo fairly soon. I was seen by Mayo after having years of symptoms but negative blood tests and EMG, although I did have a mild response to Mestinon.
Mayo was able to schedule an appointment for me within several weeks of being referred. My experience there was positive and the visit was instrumental with helping my hometown docs move forward with providing me treatment.
If you're having eye symptoms, it'll be important that you be seen by a neuro-ophthalmologist at Mayo, in addition to a neurologist. When I was at Mayo they did many tests on me, although they didn't repeat the antibody blood test. I had a Tensilon test done, as well as SFEMG, CT of thymus, and PFT's. I forget what else, but I was there about a week for testing.
I hope you get answers soon. In the meantime, try not to stress too much, as that can make MG symptoms worse. Let us know how things go for you.
Cate