What Happened to My Face?

By Sally Farrier

2 min read

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Myasthenia-Gravis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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RNEducator Member
I feel fortunate that I had a medical appointment on the day that I noticed the right side of my face was drooping. When I mentioned the facial droop to my doctor, he asked a colleague, a neurologist, to come into the exam room. She asked me to smile and quickly said, "You have myasthenia gravis." That was in May, 2012. Regrettably, that wasn't the first symptom to appear. I began to have ocular symptoms in 1970 but was diagnosed with a weak eye muscle. But I could be happy when connecting one symptom with another added up to an actual disorder. I could now understand why people asked me why I didn't smile in photos when I thought I was smiling. In some ways I was lucky in that the left side of my face also began to droop, so my face almost looks symmetrical. Now 11 years later, the facial droop is the least of my concerns as this disease continues to progress despite aggressive treatment presenting me with new challenges.
1. Jodi Enders Moderator & Contributor
 <inline-mention username="CommunityMemberf71d38" user-id="6697964"/> How lucky you were to have such a rapid diagnosis after symptoms appear. I bet it sure didn't feel like luck tho. Which treatments have you tried thus far, and do you know the type of MG you have? - Jodi, Team Member
2. RNEducator Member
 Sorry I just saw this. I seem to have created 2 accounts (I am definitely getting old!). It wasn't really a rapud diagnosis-I began having double vision in the early 1970's & was told it was an "eye muscle problem". In 2008, came the diagnosis of sleep apnea possibly related to early signs of bulbar involvement but no one put the double vision & sleep apnea together as possible signs MG. I have seronegative, refractory gMG. I always have symptoms, with swallowing being the worst and most persistent. Swallowing studies indicated that I had issues with all food consistencies. I had a gastrostomy tube placed in December 2022 because I was unable to swallow medications for more than 24 hours and that was not acceptable to me. I can sometimes swallow small pills, but have my myasthenia medications in liquid form (Mestinon 60mg q4h and CellCept 500mg q12h). I carry 2 doses of liquid Mestinon with me when I am away from home for more than a few hours. I also take low dose Prednisone, IvIG every other week and undergo plasma exchanges (PLEX) every 3-4 weeks. At times it's a bit much, especially since the PLEX requires me to be admitted to the hospital for several days. It is the only treatment that reduces my symptoms temporarily (less than 1 werk) so I am willing to deal with the inconvenience. My nephrologist is trying to get the local hospital to allow me to have a weekly treatment as an "outpatient". This way I can have the PLEX and they can monitor me for adverse effects a few hours post-procedure. I am so happy I found this forum. In many ways, I feel lucky in that although I am considered disabled, I am still fairly functional. I have bern a nurse educator for nearly 30 years and greatly miss teaching. Sharing my nursing knowledge and experience as a patient with the disease hopefully will helps others deal with MG.
manlymuffin Member
It is so helpful that you all understand.
manlymuffin Member
The last month the left side of my face looks like it is melting 
1. Sally Farrier Moderator & Contributor
 <inline-mention username="manlymuffin" user-id="6910562"/>, I am sorry that you experienced this. It can be a rather scary experience. Hugs to you!! Sally Farrier...Myasthenia-Gravis.com (team member).