Myasthenia Gravis: Fighting Back
You feel weak. Normal tasks have become difficult. You may have double vision or drooping eyelids. There are periods of anger, sadness, fear and even depression. You have been on an emotional roller coaster and you are sick of this disease. These feelings are normal. You have Myasthenia Gravis and you are not alone.
What I want you to know is that you can fight your MG. Your muscles may be weak, but inside you have an perpetual strength. You have an ability to overcome your weakness and live a normal, active and fulfilling life.
My MG Story
In the spring of 2004, I was leaving the movies with my then fiancée. We needed to go up some stairs to enter the parking garage to get to my car. Not that big of a deal for a couple in their early twenties, both of whom have always been athletes. When I reached the top step my legs felt extremely weak, like I had just gone for a long run. Once I sat down in my car, the weakness faded and we went home.
A week later I was in the gym working out. I had a regular routine and was just finishing my first set of a shoulder exercise. When I started my second set, it became very clear I was not going to be able to push the weight. It was as if my shoulders just stopped working. My first thought was that I may be pushing myself too hard and may need to scale back a bit. I finished my workout early and went home.
The next day I woke up and went to the bathroom to brush my teeth. As I brushed my teeth, my arm and hand got drastically weaker; almost to the point where I could not hold the toothbrush. It was at this point when I began to feel that something was seriously wrong. I remember calling my mother, who is a nurse practitioner and telling her what was happening. We made arrangements to see a primary doctor who she had great trust in.
At no point during my visit with the primary doctor did he mention Myasthenia. By this time tingling in my arms and hands had started. His initial concern was that I may have something going on with my brain. He ordered a CT scan. The results showed I had no issues with the brain. The only thing that was clear is that something was unquestionably wrong with me and he no idea what it was. He put me in touch with a neurologist and I made an appointment. The overwhelming feeling I had at this time was fear. I had several days before my appointment and I began asking myself questions.
What's wrong with me?
Will this go away?
How bad is this going to be?
Am I going to die?
When the day of my appointment finally came, I was experiencing extreme weakness and fatigue. I can recall not being able to move from one room to another without my legs feeling completely spent. I could not write, button my shirt make myself food without my hands and fingers cramping up. Fear was my ever constant companion. I had gone from a young man in great physical shape and in the prime of my life to the point where I had convinced myself that I was dying. It was the darkest days of my life.
My neurologists ran me through a battery of tests that included a physical examination, a nerve conduction study, MRI's and more physical exams. At this point my confidence was gone. Finally he performed a blood test. They were looking for antibodies to confirm that I had Myasthenia Gravis. The test came back positive. My first question was simple and direct: “Is this going to kill me?” My doctor said 50 years ago “yes” now “no”. I was just happy that my life was not going to end. My mother was weeping. She was horrified and convinced that they had the diagnosis wrong.
Once I knew that this disease was not going to kill me, I was thrilled. I was young and confident. I felt I could overcome anything as long as it was not fatal. I kept this strength right up to the day of my surgery. An open thymectomy is not a walk in the park. The surgeon is literally going to cut open my chest and rib cage in order to gain access to my thymus gland and remove it. My neurologist had explained to me that by removing the thymus gland, my symptoms could be drastically reduced.
The surgery went very well. I went home after just 2 days in the hospital. It had been 8 months since my first symptoms. I was in plenty of pain, but I was ready to resume my life.
Anxiety and Depression
A few weeks after my surgery I began experiencing panic attacks out of the blue. I found that simple things would give me great anxiety. My symptoms were still awful. Simple tasks were still difficult. I was constantly stressed out. My normal stress relief would be to exercise, but it was simply to difficult and painful to do so. I soon slipped into depression.
I went to see my primary doctor. He diagnosed me with post traumatic stress disorder. He said that my mind had remained strong though this whole ordeal, but I was under stress for so long that I now had a chemical imbalance in my brain.
Gaining weight, feeling constantly weak and fatigued I felt like I would never be able to have children or accomplish my dreams. I was defeated. My MG had won and I was ready to give up all hope of living a normal life.
It was nearly three years after my diagnosis when something clicked in my brain. I had been an athlete all my life. Competition had always given me fuel. What did it say about me that I was willing to let this disease break me? Why should Myathenia Gravis dictate to me what I could and could not do? It was at this moment when I decided to fight back. That day, for the first time in three years I went for a run. It was hard. I was weak and in pain. The entire run I remember saying over and over “You are not going to beat me!”. My pain was so great, tears were streaming down my face.
When I got home something extraordinary happened. I realized that I was still in control. I just went for a run. What else could I do? Slowly over time I began doing things that I used to. I started working out again. It was not easy but my confidence began to build. I made up my mind that I was going to turn my MG into my biggest strength. I can fight it. I will fight it. Every single day is a competition between me and my MG and I will win.
It has been 8 years since I was diagnosed with Mysasthenia Gravis. I am married and now an have 2 beautiful children. I have accomplish my lifelong goal of becoming a high school head football coach. I still fight my MG every day. The competition for my mind and body is my struggle. I have grown to love it. I will win.
So can you.