In 1992, while visiting China, I developed a severe upper respiratory infection. Several weeks later, I woke up one morning with double vision and ptosis of my right eyelid. My physician sent me to a neurologist who performed a tensilon test and determined that I had Myasthenia Gravis. I was told that it was incurable, that I’d have to learn to live with it, and that I’d be on heavy duty medication for the rest of my life. I had a thymectomy which didn’t help at all. I was put on prednisone and Mestinon, There were times when I was so weak that I couldn’t talk, swallow, hold my head up or lift anything.
Over the next several years I was put on Imuran and later Cytoxin. I experienced several crises culminating in a 5 day stay in ICU on plasmapharesis. At that point, I realized that I needed to take matters into my own hands, that the doctors could do only so much and that the rest was up to me. I had heard many times that the body is supposed to be able to heal itself. So I started researching what I needed to do to accomplish this. After much reading and listening to a clinical nutritionist speak, I decided to change my diet. I thought I was eating healthy by not eating red meat. But that wasn’t enough. I became a vegetarian 3 years ago and then a vegan 2 years ago. In addition, I intensified my practice of tai chi and qigong (two ancient Chinese forms of exercise that promote healing through the circulation of “chi” – life force energy – throughout the body. I also switched to liquid vitamins and minerals which are more absorbable than tablets and started practicing meditation.
About three years ago, I realized I was basically symptom-free on 10 mg of prednisone every other day. So I started reducing my prednisone, with my doctor’s guidance, by 1 mg every few months. It took over a year but on May 23, 2009 I was officially off of all medication and have been drug-free and symptom free for 4 months. My neurologist officially dismissed me from his care with his blessing when I saw him last May.
I started this blog because if I could improve my condition, other myasthenics can improve theirs also. I believe that it is crucial to take control of one's own health and to explore alternative approaches to wellness. Doctors don't always have all the right answers.
I want to help in any way possible. If you, or someone you know has MG, let's connect and share.