After my MG diagnosis, I realized the clues had been there all along

Looking back, there were signals that something was wrong. At the time, they seemed small, almost trivial, the kind of thing you notice for a moment and then forget. But hindsight has a way of turning minor details into important clues. The road to a myasthenia gravis (MG) diagnosis often isn’t a straight path.

One morning, back when I was teaching, I was chatting with a few colleagues in the school’s main office. Someone looked at me closely and said, “Your left eye is drooping.” I laughed it off. But curiosity got the better of me, so I went to the men’s room to look in the mirror. Everything looked perfectly normal to me.

A friend passed by a few minutes later, and I asked her to take a look. She studied my face and said she could see what the others were talking about. There was a slight droop in my left eyelid. She suggested it could be allergies, which seemed simple and reassuring.

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Over the next two years, something similar happened at least twice more. Someone would comment that my eyelid looked a little droopy. Each time, I would check a mirror and see almost nothing. Each time, the moment passed, and life moved on.

I didn’t realize it then, but those fleeting moments were early whispers of a much larger story. Years later, in 2020, when I was diagnosed with MG, I would think back to those mornings in the school office and realize the clues had been there all along.

The whisper before the shout

Diseases often begin quietly. They usually don’t arrive with the dramatic clarity that television medical dramas depict. They creep into a person’s life through small, easily dismissed moments, such as strange fatigue or double vision.

MG is particularly good at hiding in plain sight. Because symptoms fluctuate, it can be difficult to identify. Patients can spend years searching for answers before receiving a diagnosis. They may even begin to question their own experiences: “If the symptoms come and go, maybe they aren’t serious. Maybe they’re related to stress or just part of getting older.”

In my case, the drooping eyelid seemed too small to matter. Teachers are used to pushing through fatigue, allergies, the flu, and more. The school day begins whether you feel perfect or not.

Only later would I learn that the body sometimes whispers long before it finally shouts. One night, during the COVID-19 pandemic, I finally knew something was truly wrong.

Many communities were encouraging people to place candles in their windows to show support for first responders and healthcare workers. I put a battery-operated candle in one of my windows.

Later that night, I was lying in bed and happened to glance toward the window. There were two candles. That was odd — I knew I had only placed one there. I figured it was exhaustion; it had been a long day, and teachers were constantly fatigued during the pandemic.

Then I looked across the room at the mirror above my bureau. There were two mirrors. I knew there was only one, so that’s when I realized something was seriously wrong.

The next morning, I managed to secure an emergency appointment with my ophthalmologist, assuming the problem was my glasses. The doctor examined my eyes for several minutes, and his expression became increasingly serious. Finally, he told me I might have MG. I felt a rush of heat in my face. “My father had that,” I said. In that instant, I knew.

Fortunately, because I’ve had epilepsy since childhood, I already had a neurologist. I contacted his office and requested an emergency appointment. Unable to see me personally, his physician’s assistant examined me and ordered a series of tests. Two days later, I had a diagnosis: MG.

Trust your body

After that, my memory began rearranging itself. Moments that once seemed random suddenly took on new meaning. The drooping eyelid in the school office, the puzzled looks from colleagues who saw something I couldn’t — these fleeting episodes hadn’t been random; they were clues.

For people living with MG, that moment of recognition is frightening yet reassuring. While the diagnosis confirms that something serious is happening inside the body, the mystery finally has a name.

A diagnosis does not cure the illness, but it does provide direction. Doctors know what to treat, patients know what to research, and the long process of learning to live with the disease begins. Most importantly, patients realize their symptoms weren’t imaginary.

For anyone struggling with unexplained symptoms, I offer one simple piece of encouragement: Trust what your body is telling you. The path to diagnosis can be slow and confusing, especially with rare diseases like MG. But persistence matters. Eventually, the clues come together, and someone names what is wrong.

When that moment arrives, life may suddenly feel different. The ground shifts and the future becomes uncertain, but the mystery is gone. And that, in its own way, is the beginning of hope.

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.