What Happened to My Face?
Last updated: March 2023
Years before I was diagnosed with myasthenia gravis (MG), there were times when the left side of my face just seemed to sag way down. For the most part, I'm sure no one else noticed. But I could feel the pull, especially on the left corner of my mouth and my eyes. However, I really never thought much of it because it didn't cause any real problems.
The doctor said it was Bell's palsy
My first major face slide happened back in 2005 while I was in a flare - my condition was undiagnosed at the time. I couldn't breathe and my whole rib cage felt frozen. I had no use of my arms or legs. My eyelids were completely sagging and closed. I could not chew or swallow food. This went on for months.
One day, the whole left side of my face looked like what you'd expect from someone who had a stroke. But no stroke could be found. Therefore, I was diagnosed with Bell’s palsy and I was told there was no treatment, it would just take time.
The doctors were a little surprised that I had recovered from the "Bell’s Palsy" in a few days instead of a few months, like I was told. Over the next 3 years, there were times when my face would sag for a few days, then everything would be fine. All the while, the other symptoms would come and go, varying throughout the day. Then, on their own, my symptoms went into full remission for 10 years.
There goes my face again
In February of 2020 while driving to work, I realized the whole left side of my face felt funny. When I got to the office, I went into the bathroom to look in the mirror. The whole left side of my face was sagging.
I immediately called my husband to come get me and take me to the emergency room. It would take about 30 minutes for him to reach me. Then I proceeded to go to my boss's office and let her and her assistant know I would be leaving work about 30 minutes early. They both just stood there staring at me, never offering me to take me to the emergency room that was 5 minutes away.
Trying to get the correct diagnosis
When I finally got to the emergency room, I was evaluated immediately. Because I live in a rural area, they got a neurologist for a virtual evaluation. I remember he wanted me to stick out my tongue. Hard as I tried, I could not get my tongue to pass over my lips.
He diagnosed me with facial paralysis. It was another 9 months before I received my first trial of Mestinon with a possible myasthenia gravis diagnosis. It took another month after that before I was finally diagnosed with double seronegative MG.
Face sagging is normal now
Now even with the use of Mestinon, CellCept, and Prednisone, the left side of my face just tends to sag on a daily basis (or at least until my next dose of Mestinon kicks in.) So, I'm pretty sure my first encounter with my face sagging was not Bell's palsy, just undiagnosed MG.
My most frustrating MG symptom is _____.