Hi, my name is Elroy Tschirhart and I live in San Antonio, Texas. I have a rare, often misdiagnosed disease called Myasthenia Gravis, known also as MG. The Myasthenia Gravis Foundation of America (MGFA) has designated June as MG Awareness Month, and this forward is part of an international effort to promote awareness of this autoimmune, neuromuscular disease. Symptoms of this terrible disease can include slurred speech, double/blurred vision, drooping eyelids, weakness in the arms and legs, and difficulty breathing, chewing and swallowing.
I was very fortunate in finding an ophthalmologist who knew about MG when I kept my appointment to find out why my eyes seemed to be drying out. She took one look and told me that my eyelids were not closing all the way and were thus drying out. She also told me she thought I had Myasthenia Gravis. My wife Gail and I asked, “What is that?”
I then made an appointment to my family doctor who sent me to a neurologist and a blood test that confirmed the original diagnosis. I was prescribed Mestinon and eye drops, but Gail and I had to go to the internet to find all the answers to our questions. Life continued with these medications for about three years and then one day I had difficulty chewing and swallowing which is a scary experience because choking is a strong possibility.
Again, I was so fortunate because some patients lose 20, 40, 80 pounds before the right medication is found. When we returned to the neurologist, we were not happy with his apparent lack of interest with my struggle. I continued with the small, soft meals eaten several times a day so I wouldn’t choke and lose weight, and I continued to slur my words when I tried to speak.. Each time I tried to eat, Gail was horrified that I might choke. She, too, had a difficult time eating.
In the meantime, our daughter-in-law, who is a clinical pharmacist at the Audie Murphy Veterans Hospital, told us about a professor of neurology at the UT Health Science Center. Apparently, others had heard of her too as it took two months to get an appointment with her, but she has been a blessing to us and many other MG patients. Her thorough examination showed my arms and legs were not as strong as they should be, my eyes were affected and the muscles in my jaw and tongue were weak. She increased the Mestinon and prescribed Prednisone. It was not long before my quality of life improved even though stress would sometimes bring back the symptoms.
It has been two years; I take medication (mestinon) four times a day and prednisone every other day so I can eat normally but I still have problems with my eyes, especially late in the evening when I am tired. I can easily take a nap in the afternoon. With the medication, the disease is under control. Although it can go into remission, there is no cure.
Gail and I began an MG Support Group here in San Antonio a year ago to put MG patients in touch with each other. It has been a wonderful, rewarding experience since many have never met another MG patient and there are few resources for people with the disease.
Since there is no cure for MG, and because this disease is rare, it can go misdiagnosed for years. Both are unacceptable. Help me show the world one of the many faces of Myasthenia Gravis by forwarding this email to everyone in your address book. Please join our fight because “Together we are stronger.”
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