Sophie
Forum Replies Created
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With strangers/acquaintances/coworkers: I feel less offended as time passes because I learned “people just cannot understand”. It is such a rare condition. I used to explain briefly in a few short sentences describing MG but nowadays, I don’t bother. If I am around them often they can see it for themselves. IMO, it is not the MG that they want to learn about but how I face the challenges that come with it, so I make every effort to be reliable, hardworking, punctual despite looking & feeling like a train wreck sometimes because MG is kicking my behind. And after awhile, most people would have more respect for me whether I have disclosed my illness to them or not. I also make up for people’s ignorance and quick judgments by doing more self-care (more sleep time, relaxing with scented candles, playing with my dog, eating delicious meals, going for a massage, etc).
With family & friends, they are very supportive and understanding, if they gave a silly advice, I don’t feel offended because it is coming from a good place.
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Jim, sorry to hear about your wife 🙁 I do believe her manifestation of symptoms is common. Symptoms spiraled for me the first 6 months until accurately diagnosed and stabilized on prednisone. Did doctors prescribe any immunosuppressant drugs or corticosteroids? Mestinon/pyridostigmine does not delay/prevent the progression of myasthenia gravis, it is a transient band-aid that lasts only few minutes/hours. In regards to regaining strength during the day, the only thing that helps for me is to take a good nap after being awake for few hours, and doing some neck and upper-back strengthening exercise only when I am feeling strong. I would not recommend doing any exercises when she is feeling weak as it can only worsen her symptoms.
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I have the opposite of drooping head syndrome, where I lift my chin up 24/7 even in my sleep and am not always aware that I am doing it. Not only do people stare and make fun, I also experience constant neck pain. Only diagnosed with ocular MG but few years into disease, I started having neck and bulbar weakness (tired from chewing food too much). Neurologists never offered a solution and did not diagnose me with GMG (one said my chin lift is due to eyes weakness and am compensating). I will try ice pack and massager..