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I have a pacemaker since 2008 . MG was diagnosed in 2002. I live with arthritis since 1980. I exercise every day and opted for physical therapy instead of surgery when I had severe arthritic pain in the 1980. In 2002 when I was diagnosed there was a physician with MG in the support group who recommended consulting with a dietitian to control the weight problem that Prednisone will cause. He also recommended exercise which had been part of my life. I have reflux problem, nerves problems which cause pain and scratching in my legs, eyes problems (outside of myasthenia). All my organs who rely on muscles have dropped down. I had speech therapy for swallowing and coughing problems. I used a machine to strenghten my throat muscles: EMST recommended by the speech therapist. I have osteoporosis, etc. etc. My recent blood test (Jan. 2025) is abnormal, not spoken yet with the neurologist on that.
But I am still around. Actually my first symptoms: double vision (1972)which lasted 1 week were considered due to fatigue since I had just moved to Michigan with 2 children under 3. The symptoms were gone after a week. But in 2002 I had double vision for over a month and no specialist could diagnose me until I saw a neuro ophtalmologist who ordered a blood test and discovered the myasthenia. I was put on 60 mg on Prednisone by the neurologist, dont remember for how long. That is my story with myasthenia. I do 30 minutes of biking ( Nustep) 5 times/week, try to walk outside, weather permitting: 20-30 minutes, do stretching in bed before leaving the bed. I forgot that 2021 I felt and lost my balance ever since and use a walker. All the physical therapists in the hospital I go to know me. Finally I had Covid in Jan. 2024 , but the symptoms of myasthenia took over and was treated for myasthenia in acute care for 6 days.
I have a spiritual life. Other people have worst conditions than I do. I am thankful for where I am but at 6 PM I look for my bed because I feel very tired. I feel good when in bed.