It was almost 25 years ago that I first heard the words “Myasthenia Gravis”, or should I say, paid attention to them. I was having trouble with one of my eyes where everything I saw was pink. I went to the eye doctor who, after examining me, asked if I had ever been tested for Multiple Sclerosis. I hadn’t, so off to the doctor I went wondering what was ahead of me. After a series of tests and scans, I was sent to a neurologist. He performed additional testing and informed me I didn’t have MS but he was going to test me for Amyotrophic Lateral Sclerosis. I didn’t even know what that was until he mentioned the commonly used term “Lou Gehrig’s Disease”.
Lou Gehrig was a famous baseball player who played for the New York Yankees back in the 1930’s. In 1939, he took himself out of the Yankee lineup when he felt he wasn’t performing at his best. He later found out he had Amyotrophic Lateral Sclerosis (ALS). He lived only 2 more years before succumbing to the disease in 1941. All I knew about ALS was that it was a horrible disease that quickly puts its victims in a wheelchair and that the average life span with ALS was incredibly short.
It took 10 days to get the results back from my blood test for ALS, so during those 10 days I did nothing but worry and got my house in order in preparation should the results prove positive and catastrophic. When the results finally showed up, I was greatly relieved to hear I didn’t have ALS, but we still didn’t know what was going on with me.
Although my neurologist had thrown up his hands, my family doctor wasn’t ready to throw in the towel. She sent me to a different neurologist who felt I may have Myasthenia Gravis. I went through some additional testing. Blood tests turned up negative, but MG was so rare that not a lot was known about the disease and not a lot of research had been completed.
The next step in the diagnostic process was a biopsy of my eyelid, but there was a rather large danger involved. The danger was not as you would expect for the eyelid or eye, but rather how a positive diagnosis for MG would affect your ability to get insurance in the future. Back in those days insurance companies could refuse to insure pre-existing conditions. Since my symptoms weren’t terribly bad and there were very few treatments available for MG at the time, I made the decision not to have any further testing completed. I was instructed by my doctor to use the term “Suspect for Myasthenia Gravis” when being treated by other doctors. The symptoms I was experiencing actually got better over time without treatment. I now know I was in a period of remission. I was very fortunate as my remission lasted for nearly 20 years before symptoms returned later in my life.
When the symptoms returned 20 years later, they were stronger than before and I knew I had to see someone about it. We had moved to a different state, so none of my old doctors were close enough to see. I told my new family doctor about being “Suspect for Myasthenia Gravis” and the symptoms I was now experiencing and he immediately sent me to a neurologist. The new neurologist repeated the blood tests and added some additional tests that had recently been developed. He prescribed Mestinon and my symptoms improved immediately. We were still coming up negative on the blood tests, but the improvement with taking Mestinon along with his clinical findings resulted in a confirmation of seronegative Myasthenia Gravis.
Myasthenia Gravis is a rare disease and seronegative MG is even rarer, but I was finally relieved to get a diagnosis and start on treatment. Although MG is tough at times and I get frustrated not being able to do some of the things I used to do, I’m still very appreciative it isn’t any worse. My heart goes out to all those people who suffer severe MG symptoms and even more so to those who have ALS or MS. I can still get around and do most everything I choose to do, whereas some with MG aren’t nearly as fortunate. That’s why I’m not going to spend time feeling sorry for myself. Instead, I’m going to spend time getting the word out about MG and hopefully encouraging people to donate towards research and the development of medications that will help those with severe cases gain more mobility and be able to do more things and enjoy life.
One of the biggest difficulties with MG is the difficulty in confirmation. As I mentioned in my previous blog, symptoms can come and go, so you’re never quite sure if they are real or imagined. Trust me, they are not imagined. When my eyelids sag or I lose my voice, it’s real. When I catch a cold and become so weak I can’t cough things out of my lungs, it’s real. When I get brain fog and can’t think straight, it’s real. Luckily for me, the medication helps. I still get breakthroughs and I have to be really careful when I catch a cold, but it’s part of life now. A good doctor, like my neurologist, knows what to look for and how to best treat you. My neurologist is a Godsend. God only gives us as much as we can handle and when he gives us something, it’s usually an opportunity he wants us to pursue. I’m going to pursue MG through my blogs and other methods, not for me, but for those who are unable to pursue it on their own.