Sophie
Forum Replies Created
-
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.
-
I was considered seronegative until a year ago when I asked my neuro for the anti-LRP4 antibodies test and it came back positive. Did y’all have this test done? If not, it would be good to know since it is not commonly tested for and thus it’s a group that is much overlooked (for research) compared to anti-MUSK and anti-AchR.
-
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.
-
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..