• Community Member

    Member

    My path is different from most here. I was diagnosed in 1981 but, after many years, realized that my main symptom of laryngitis actually started in the mid 1970s. I had cancer treatments in 1977 and once I recovered, I was stronger than I had ever been until an unrelated, outpatient surgery in early 1981 brought it back. I’m lucky – my diagnosis only took a visit to an ENT who referred me to a neurologist. Until 2008, I had good years with minimal issues and I always limited my activity to accommodate. Then menopause, HRT and aging brought it back with a vengeance. Prednisone makes my MG worse, like many others. I’ve tried IVIg (aseptic meningitis every time), PLEX (minimal success), Imuran, Prograf, and Cellcept (all had different but dangerous side effects), and now I’m on 4th year of Rituxan which has stopped working.  Prior to Rituxan, I took 5 60mg Mestinon every 3 hours so on long days I exceeded the maximum of 2000mg per day. Now I take 3 60mg every 3 hours but that doesn’t allow me to walk unassisted but all my stomach can tolerate. In the past year, I have had extremely low O2 with exertion and pulmonologist has me on O2 24/7 with mechanical ventilation at night. However, except for the extreme weakness which is both legs (left is worse), hands, arms, diaphragm and throat, I’m otherwise healthy.