Many people don’t know what it is like to live with Myasthenia Gravis because it is a rare disease. I’d like to shed some light into my life.
Since Myasthenia Gravis affects my muscles, I am often weak. Most often my symptoms begin with my eyes. Almost all of the time, my right eyelid droops. To people who don’t know me it may not be noticeable, but it is to me and my family and friends. It becomes noticeable if my symptoms worsen and there’s nothing that I can do about it. I then begin to feel like my forehead is drooping. You can’t see that, but it’s a pretty awful feeling. My speech can get slurred and I sound like I’m drunk. My head feels heavy, too heavy for my neck to hold it up.
If I get worse, my arms and legs then begin to feel very heavy. I often feel that I can’t move, especially walk. This doesn’t scare me any more, but it annoys me. I get very frustrated because I feel like I’m stuck in one place. I do have a scooter to use so if I feel strong enough, I can use it.
The worst symptoms for me is feeling like my throat is closing up. When I am extremely weak, this happens suddenly. This scares me a lot. It makes me feel like I’m choking. This will also happen for no reason in the middle of the night. I have to either get up myself or if I’m too weak, have my husband get some food (if I can swallow it) and my Mestinon. I also have trouble swallowing food sometimes and issues with breathing, especially when I move around a lot.
When I have a flare up, these symptoms are more constant, but on normal days, they do not happen very often. Being in the heat, getting stressed, being around chemical odors (even cleaning supplies) and just doing too much physically can set the symptoms off.
Life with Myasthenia Gravis, is not too bad because I know that most of the time my medication can control my symptoms. It may take some time for it to work, but it does work. If I need to have my medication dose changed, I can call my neurologist or go see him.
I haven’t been to the ER because of MG symptoms, also called a crisis, in years. I am grateful for what I am able to do and how my life is going right now.