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I am safely for the past 15 months in remission with CELLCEPT and MESTINON, so I am slowly getting back to working on projects and gardening, now that I know that I have “finger strength” back to keep the grip on the “on levers” of mowers and edge trimmers. Also I am now confident enough to get back down on my knees again, and know that I can stand up again, without my calf muscles dying, and having to crawl back and get into a chair or a planter box edge to rest, and try again to get on my feet.
So being in remission NOW. I feel that I am ME AGAIN …. and can start considering what passions I can go back and restart. I was in five hospitals for 5 months, and had total loss of speech and hearing, due to a hospital overdose of ANESTHESIA to keep me still for CATs and MRI’s. Then I contracted in their ICU three types of PNEUMONIA, so they gave me TOBRAMYCIN and other ANTIBIOTICS, so I had total hearing loss for 4 months also. So I am thrilled to be hearing and talking again … so want to go to concert venues, or even a local sing-along or a Karioke (sp??) once people can start meeting again.
Also now that I was finally diagnosed with MG by a hospital nurse, after EVERY DOCTOR FAILED he for 8 months, I have been attending by ZOOM three MG support groups, and learning from them … and how they made it to a diagnosis and their tips …. but it would be so nice to talk to MG people IN PERSON. I have yet to me one, and share war stories, and who are the GOOD doctors in my area, and which ones are the clueless NEUROLOGISTS, who were unaware of MG and kept testing me for stroke, seizures, GERT, diabetes, heart attacks, toxic metal poisoning, and infectious diseases … instead of REALLY LISTENING TO ME …. and my symptoms.
But I am happy to be well again. So refind your passions, and take time for resting breaks. WISH YOU SUCCESS…. Too.