Coping With Myasthenia Gravis

I have MG and can no longer hold up my head. The disease developed very quickly. One month I was functioning normally, and the next, my world had been turned upside down. I am a retired teacher and had a much different view of my retirement years. Learning to cope with this disease has been a challenge.

Initially I had fatigue and back problems which were treated with pain medication and physical therapy I have been healthy my entire life, but weight gain and edema had become health concerns since retirement and appeared to explain the difficulty climbing stairs, being out of breath, muscle weakness, and fatigue. In late October of last year, I had trouble raising my head high enough to drink from a can. A back specialist dismissed the problem by commenting that my posture was the problem. In November, I developed an eye tracking problem and mild double vision. By now I held my lowering head at an angle, one shoulder higher than the other, looking sideways at the world instead of straight on. My eyes had always been large and open; now the lids had drooped to give the impression I had just awakened. In December I broke a rib when a bureau toppled over on me. A young physician in Urgent Care was concerned that my neck muscles were too weak to hold up my head and suggested Myasthenia Gravis as the problem and urged neurological follow up.

My neurologist prescribed a myriad of tests before diagnosing Antibody Negative Myasthenia Gravis Treatment has included prescription drugs Mestinon and Imuran; and infusion therapy (Infusion IG). There has been no improvement in my condition. In fact, the muscle weakness is worse. By now, I can no longer hold up my head on my own. It rests against my throat and affects my breathing, swallowing, and speech. I wear a bib when eating because of the angle of my head; I spill my soup and need a straw to drink from a glass. I can see only what is immediately in front of me. My horizon has shifted to belt buckle and below; I see mostly feet. In appearance, I resemble an upside-down J. Crossing a street is particularly hazardous. I bump into head-level protrusions because I don’t see them. To reach above my head is difficult, and to pull something down from above perilous: with head down and arms up, the object is lowered hopefully without spilling or dropping. Digestive problems occur because of the head being down: acid indigestion and heartburn with GERD have been added to the mix. With my head resting on my chest, my balance is affected and I fall easily.

I have been referred for physical therapy to reduce the muscle stiffness and resulting pain. If remission is possible, some semblance of normal neck movement must be maintained, and I have pushed for the PT. I was given a collar to wear, but it strangled me and put too much pressure on my teeth and jaw. A brace has been prescribed. But because of the rareness of this disease and the head-down position, there is no prototype which allows movement of the head while still maintaining its normal upright position. This remains a work in progress.

Because of my negative response to all treatment, the next event will be a muscle biopsy. In all, this is not how I expected to spend my retirement years. My attitude has been mostly positive, but there have been lots of tears, especially on the days when fatigue is extreme and the head presses firmly against the throat. I feel the stares of people when I am in public, and some approach to ask what’s wrong with me. When in close contact with strangers, I feel compelled to explain that my inability to make eye contact is the result of Myasthenia Gravis and people are mostly helpful. But this is not a pleasant disease to live with. In the vernacular: This disease sucks!