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New life with MG

I’m just starting my journey with MG. I’m scared and concerned. People are beginning to notice that there's something wrong. My eyes are sagging, they drift outwards. I have trouble completing workouts.
My Neuro-ophthalmologist diagnosis me on Friday, July 30. Now I’m waiting for the antibody tests results. Now I’m realizing I might have more symptoms than I thought. Like my fingers shake
Sometimes making it hard to touch my nose normally. I have a couch that my allergy specialist swears is GARD but respond better to Benzonatate than Famotidine. Has anyone one else experienced such concerns?

  1. Hello from an advocate. My husband had a similar experience. It actually took 4 years for accurate diagnosis and effective treatment. Part was his fault. For the first two years the symptoms were ocular and mild. When the first blood test came back negative, he tried to put it out of his mind (and just shut one eye when the double vision hit.) Then he got really sick, and was totally mis-treated. (Levaquin IV!) Finally at a major and very competent hospital system he had very thorough diagnostics and a real expert--the only one in our state--identified triple negative MG. Now 3 years of consistent medication and IV Ig has really made a different. I'm writing a little diary tonight about his biking! I write this to emphasize that you must be persistent, consistent, and take good care of yourself. You will improve! Juliana ( team)

    1. It's been a really rough month. My allergists had me complete another pulmonary test. I had to try 5 times before we got a reading. The results were odd as always. The numbers were normal but the breathing pattern, which didn't indicate asthma, still was not normal. I had a test for Gerd which was totally normal. I have seen my ENT he says there is a lot of fluid throughout my throat but my vocal cords looked OK, that day. However, I still cough up clear stuff or some sort of mucus on a regular basis. It is difficult to speak, people are beginning to misunderstand what I'm saying, it hurts to speak louder, not that it seems to help anyway. My left eye still floats off when it pleases and refused to stay open one morning. My right eye has develop twitching in the lower lid in addition to all the other wonderful tricks it too does. People are beginning to notice and asking if I'm O.K.

      To make this mystery even stranger my antibodies test are normal or are they...hmmmm
      My AchR= 25 to be borderline I needed to test 26; however my AChR Modulating Abs, serum is <12. The lab noted that a reflex(a redo) should be done, it wasn't.

      On Aug. 24,2021 all the tests I requested have been completed and the rather tedious process of sending new records to my specialist has begun again. The good news is that based upon what we know now. I have been cleared to begin Mestion. I'm Waiting on Walgreens to fill it now. It was called in at noon, it's 3:00P.M.

      1. The clear mucus is part of the Myasthenia Gravis. Had to use a suction devise to keep from chocking.

      2. oh okay

    2. I was diagnosed last year. Before my eyes started closing and the double vision started, I thought my asthma or allergies were severe. Excess mucus , I learned is a symptom of Myasthenia Gravis. I was prescribed allergy medicine by regular doctor. This included drooling, thick mucus in my throat(really thick mucus). When I got to the point I couldn’t swallow water without chocking I went to the emergency room. If your chest or shoulders hurt it could also be signs of Myastenia Gravis. My blood tests left no doubt that I had Myastenia Gravis. The good thing medication and other treatments can help you lead a more life. I have learned to stop and rest when I get tired. I set alarms on my medicine dispenser so I take medication in a timely manner.

      1. Mestinon 180 mg

      2. @ljfm So glad to hear that Mestinon is working well for you! Thanks again for providing some insight into your experience. Please keep us posted on how you're doing! - Kaitlyn ( Team Member)

    3. Hi , thank you for sharing your experience! I understand the fear and concern you feel and went through similar feelings as I navigated my diagnosis. Now that you have your diagnosis, I hope you can work with a great neurologist to find the best treatment for you! I have not tried the medications you listed, however, I recommend you bring up any concerns with your neurologist as they will be better able to address your questions! Have you been able to talk to a neurologist about your new diagnosis and symptoms? - Jessica ( Team Member)

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