Myasthenia gravis is more than the list of its symptoms

I blame a whole lot of things on myasthenia gravis (MG), even things that are not actually considered symptoms.

My body says otherwise, however. Although I still believe some of the issues I experience might belong to a secret illness that has not been discovered yet, certain feelings and physical experiences keep pointing back to MG.

Two that I began to experience early on are shortness of breath and an inability to walk at night or in the evening. As I was only 9, it was not obvious to doctors that this could be MG, but there were other signs, too. I used to have bruises all over my legs because I fell so frequently from exhaustion. I still remember getting so tired from running around and playing with my sister that my arms would start to feel heavy. I would keep going because I was having fun until my legs literally gave out.

And then there is breathing. It was not simply about being out of breath after running. It was about struggling to get enough air in.

Another thing I experience is that even when I do not have swallowing difficulties, it becomes almost impossible for me to swallow anything when I am having trouble breathing. What else could explain that? Then there are soreness, pain, and muscle contractions, which are probably the worst for me because nobody seems to associate them with MG. I only experience them after effort, and they can almost magically disappear with rest. That connection is obvious to me, even if it doesn’t fit neatly into what doctors consider symptoms of MG.

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I also keep postponing bath days because taking care of my curly hair is one of the biggest challenges for my arms. I always end up keeping my hair short because when it gets long, I eventually reach the point where I am crying and asking for help. I do not believe this is caused by anything other than MG.

Also, while I do not have ocular MG, my eyelids shake when I am tired. I cannot keep my eyes open, and they become so painful and tired that I usually end up either crying or sleeping. Again, nobody really relates this to MG, yet it happens when I am exhausted.

Sometimes I get angry for no reason. I feel tired from the noises around me, and for a long time, I thought this had to be related to some kind of mental issue. But after that was cleared by doctors, I started realizing that maybe I am simply tired of constantly managing my condition. I am frustrated from living with constant pain in my muscles, and there is always this background noise of pain and exhaustion in the back of my head. I try to shut it off, but it is not magic. It still affects me. I become impatient, tired, and much more likely to get angry by the end of the day.

I live constantly in survival mode. I overthink what I pack, how I can get home quickly, where I can rest, how long something will take, and what might happen if my body suddenly decides it has had enough. I also jump into new adventures with a kind of fierceness and devotion that people associate with my love of living, but there is fear behind it, too. I am afraid I might not be able to do it another time. I am terrified of a flare-up knocking on my door.

When I plan any activity, I think about catastrophe first. I ask a thousand questions about transportation, places to rest, how long it will take, what I might have to lift, and how quickly I could get home if I suddenly could not continue. People think I am just extremely organized, when in reality, I am scared of falling apart.

I know these things are not necessarily symptoms of MG, and I am not saying every pain, emotion, or behavior is caused by it. But I am sure that if doctors had looked more closely at the way I functioned, rather than only at the symptoms I knew how to name, it would not have taken 10 years to discover my illness.

And I am sure there are plenty of others like me. MG is a sneaky condition that does not only affect your muscles. Sometimes it takes control of the way you plan, move, think, and live, even when none of those things appear on a list of official symptoms.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.