I was diagnosed with myasthenia gravis 22 years ago. My symptoms at that time were generalized muscle weakness, double vision, droopy eyelids, difficulty chewing, swallowing, and holding facial expressions, change in voice, limb weakness, and shortness of breath. Shortly after I had a thymectomy, it went into a remission. I have had many flare-ups since my diagnosis, when I went on drug called Mestinon (pyridostigmine).
Myasthenia gravis was all very new to me at the time. The name alone scared me. What was going to happen to me? Where would I go for help? Who would help me? And why was I always tired? I didn’t know anything about it. I certainly didn’t know any of the symptoms or treatments. When I started to do research, I soon discovered that there was no known cure for myasthenia gravis. So here I was with so much left to do yet in my life—if I only had the energy.
The hardest part of having myasthenia gravis was explaining to my family exactly what I had, what my symptoms were and why I could talk in the morning yet by late afternoon nobody could understand me. To this day my children still say, “Mom your eye is drooping.” I think now they know. After my diagnosis I decided to have the thymectomy. I really needed something to happen, and I was scared. After the surgery my symptoms went into remission. What a relief! I was happy that I decided to have the surgery.
I have since learned a great deal about myasthenia gravis. Thanks to medical research, there has been remarkable advancement in the understanding of what myasthenia gravis is and what its symptoms are (though more research still needs to done). We know now that the disease is caused by an autoimmune attack directed against the neuromuscular junction (the link between the thymus gland and the immune system). (See sidebar below).
Myasthenia gravis has become a way of life for me now. I am not scared anymore. I now know why I get tired, and when I do; I try to rest. I would like to add my thanks to all of the parents and family members who have been in the forefront helping bring about more awareness regarding myasthenia gravis. I also thank those who have advocated on my behalf.
About Myasthenia Gravis
Much has been learned about myasthenia gravis during the past 20 years. What was once a relatively obscure condition of interest primarily to neurologists is now the best understood autoimmune disease. Myasthenia gravis is the most common primary disorder of neuromuscular transmission. The usual cause is an acquired immunological abnormality, but some cases result from genetic abnormalities at the neuromuscular junction. A wide range of potentially effective treatments are available.
There are approximately 36,000 cases of myasthenia gravis in the United States. However, it is probably underdiagnosed, and its frequency is probably higher. Early studies showed that women were more often affected than men; more recent data suggest the opposite. The most common age at onset is the teens and twenties for women and the 60s and 70s in men. As the population ages, the average age at onset has increased. Now males are more often affected than females, and the onset of symptoms is usually after age 50.
Patients with myasthenia gravis come to the physician complaining of specific muscle weakness and not of generalized fatigue. Ocular motor disturbances (eye issues) are the initial symptom of myasthenia gravis in two-thirds of patients. Difficulty chewing, swallowing, or talking is the initial symptom in one-sixth of patients, and limb weakness presents in about 10% of cases.
Source: James F. Howard, Jr., M.D. Department of Neurology, The University of North Carolina at Chapel Hill www.myasthenia.org