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  • Chuck Hurley

    March 23, 2022 at 8:11 pm

    More results on diplopia, particularly the progression from ocular MG to general. Many thanks!

    Chuck Hurley

  • Douglas Manning

    March 24, 2022 at 1:44 am

    What great posts highlighting just how bewildering this condition can be! I am trying to conjure up a “D” word for the invisible nature of the disease. Maybe its “Doesn’t get seen by most people”? How did I change from hiking, running, lifting, and standing for hours at a time and then suddenly in the span of onset and the first “crash” seemingly lose it all? How many times have well-meaning friends and family said something akin to “Well, you don’t look sick at all!”? When the weakness hits you and you can no longer bound up several flights of stairs, or you go to shake hands (pre-pandemic of course) and “miss” because you reached for the wrong hand? I’m sure you can insert an episode for each of the “D’s” when you were met with a perplexed look because your look fine, not ‘sick’ at all. So, as we all manage our personal journeys (I also use music therapy to tame tinnitus – someday this will be listed as a symptom), how do we kindly and calmly educate those who are well-meaning?

  • Sharon White

    March 30, 2022 at 8:28 pm

    Drooping eyelids, double vision, decreased energy

  • Sheila Troiano

    April 7, 2022 at 1:30 pm

    Another ” d ” word…disappointed. I’m disappointed in some family members lack of understanding. They don’t get that I my have said I would like to …such and such on a particular day. The day comes and I have a ” low” day and am physically unable to do what I thought I may be able to do.  Most people I work with seem to be more understanding. I do work with nurses, doctors , social workers and therapists. You wouldn’t believe how many of us are suffering some type of autoimmune disorder. We are compassionate to each other and aware of some of our limitations. I wish my immediate family would ‘ wake up’ and be more supportive. It would be nice if even one of them would have watched the video that one of you so nicely shared a while ago about a day in the life of living with myasthenia. . I e been living with myasthenia for three years plus now. Sorry to say, my family still doesn’t get it.

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