Barbara A.
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I’m 68 and have had MG for over three years following a thymectomy for a thymoma. I am on round 7 of Vyvgart, have had two rounds of Rituxan every six months, and take Mestinon daily. The two symptoms that do not improve are constant double vision, and thigh muscle weakness which affects my gait. I have previously done IVIG, prednisone, Imuran, Cellcept.
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At age 65, during a cardiac work up, a large thymoma was discovered on me. I underwent a robotic thymectomy, followed by radiation since it was invasive. Approximately two months later I began having symptoms of myasthenia gravis. This was confirmed by the neurologist with positive anti-ACH levels. I have had moderate generalized myasthenia gravis for the past 3 years, and have been on steroids, Mestinon, IVIg, Imuran, Rituxan, but I am down to just Mestinon and Vyvgart infusions. I get yearly chest CT scans to check for recurrence of the tumor. So yes, you can get MG after removal of a thymoma.
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A mediastinal mass was detected at age 65. I had no symptoms from it other than arrhythmias that came and went. I had a robotic thymectomy three years ago followed by radiation since it was invasive. I thought I was out of the woods since I had no symptoms of MG. Five months after surgery I began experiencing double vision and ptosis, saw a neurologist who found I was ACR positive and it was downhill from there. I have full blown gMG and have been fighting it since then. Steroids, Mestinon, Imuran, IVIg, then Vyvgart and Rituxan. The proximal muscle atrophy is severe and the diplopia is constant. But I still live independently and push myself to stay active and involved.
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I was originally taking 60mg of Mestinon 3 times a day. The diarrhea was ridiculous so my doctor switched me to 180 ER and things calmed down. I take it late afternoon. It works for 24 hours, and I can take an additional 30 or 60 mg in the morning if needed. Can’t wait for the nasal spray to come out.