Some Myasthenia Gravis Symptoms Scare Me More Than Others

When I was diagnosed with myasthenia gravis, I did what most people would do: I Googled my new rare disease and came to the instant conclusion that I would die within the next 48 hours. Dramatic, yes, but Google searches rarely lead to encouraging news.

Before my diagnosis, I was already experiencing weakness in my limbs, face, and left eye. But after reading about all of the other possible symptoms, including breathing muscle weakness, my fear went through the roof. How much worse could this possibly get? And would I ever stop being scared at the slightest sign of weakness?

While every aspect of MG is scary, there are certain symptoms that frighten me a bit more than others. Maybe it’s because I’ve lived with them longer than the others, or maybe it’s because I haven’t completely worked through the trauma of having them. Whatever the reason, these symptoms cause the most anxiety.

My first MG symptom was difficulty swallowing and chewing. It was weird for my mouth to suddenly stop working correctly. Liquids would dribble out between my lips, and I would choke on the smallest bits of food. And it wasn’t just the symptoms that scared me, it was what they could lead to. What if I choked while I was by myself? What if I could no longer eat without medical assistance?

The combination of symptoms and their possible effects still make me fearful whenever I swallow food and start to cough, or when I drink water too quickly. For a second, I’ll wonder if my MG is making an encore appearance. I’ve been lucky so far. And to be fair, I really should slow down when I eat.

Double vision is another symptom that makes me anxious. It’s another one of those symptoms that can lead to other accidents. When I first experienced double vision, I decided I could still drive without incident. Was this a dumb decision? Of course it was, but I was still in a denial phase about my MG. So, my brilliant way around the pesky double vision was to simply cover my left eye while I drove.

After experiencing weakness in my face and left eye, I also started to feel it in my limbs. Washing my hair became next to impossible, and walking up the stairs was a no-go. Even when I tried to walk down my dangerous back stairs, which include all of three steps, I fell down on my knees and had to drag myself back to my house. Again, this kind of weakness could lead to many types of accidents, such as falls that cause cuts, broken bones, or worse.

As time has moved forward and my MG has remained stable,  these symptoms keep me on my toes. But I’ve learned to use fear in a positive way. Instead of stressing out, I channel my fear into staying focused on what I can do now. Currently, I can walk up and down the stairs without issue, and I can chew and swallow successfully. Therefore, the “right now” is all that really matters.

We can’t change the past or predict the future, but we can appreciate the present and take care of ourselves as best we can. I refuse to let the fears of my past stop me from enjoying the present.

***

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.