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I have Myasthenia Gravis, I have not responded to treatment,anyone else not responded to treatment? |
I'm taking Mestinon, Prednisone and Imuran. I have had a Thymectomy, received Plasmapheresis and Immune globulin therapy. I have noticed very little improvement in my strength and endurance. My legs and arms are still weak, I loose my balance and drop things. Swallowing is still a problem as is my breathing. I start walking and must rest every 200 ft. as I continue the walk, the rest stops become more frequent and last longer. When I try to push it a bit, my legs will give out and/or my breathing will become extremely difficult, only by resting can I continue. Showering, housework and many other simple things have become very difficult. At this rate I will never lose the weight I've gained. My Dad and an uncle [not related to each other][both had it, and I've seen people with it. My Dad had a mild case, caught early thanks to a wife and a daughter who were nurses, and a routine eye exam and a eye doctor who scared Dad so bad he went to the neurologist straight from the eye office, after ignoring the wife and daughter, because he never listened to his daughter the nurse. Doctor periodically fine tuned the mestinon and the Pred, and he got better, his symptoms were a drooping eye, swallowing problems, and a leg that he felt was weaker than the other, and general weakness on some days. And a big mood swing problem, Mom and I knew when it was prednisone day. The uncle ended up on a respirator, had the plasmapheresis, but he eventually got better, he needed a plastic brace on one leg for support the rest of his life, and went back to working in his olive orchards. Do you have a specialist? get one. I'd be more confrontive and asking what else should I be doing, why do you always seem angry with me? 5 years to diagnose MG, when the diagnosis is a couple eye drops and waiting to see if there is a reaction? Boy, I'd be questioning some doctors. Report It Dad's symptoms were mild, and Mom and I insisted he go get his eyes checked, knowing that the eye doctor would pick up on the droopy eye, and he did. usually it takes long time and since you are diabetic so this retard recovery so you have to struggle and insist and never give in and physical therapy now is very effective try another center |
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