My Misdiagnosed Journey to a Myasthenia Gravis Diagnosis

About five years ago, while traveling weekly for my job, I was in Canada when I first noticed an issue: my right eyelid was drooping, making it difficult to see. After returning to my large metropolitan home, I visited my eye doctor. He referred me to a plastic surgeon, though I didn't go. Within a couple of weeks, my eye returned to normal.

The next episode was more alarming. I was near Des Moines, Iowa, and had just stopped for lunch. I tried to eat my sandwich but could not swallow it. Seriously concerned, I went to a walk-in clinic, which immediately assumed I was having a stroke and sent me to the local hospital by ambulance. They performed an MRI and, after several hours, stated there was nothing wrong with me.

I knew better, but the next morning, I intended to proceed to the work site on their advice. However, breakfast resulted in the exact same swallowing problem, so I went directly to the airport and flew home.

The relief of mestinon and the struggle for care

The next day, my doctor initially suggested I had been affected by Botox and that the symptoms would simply fade. After that, I went straight to the hospital emergency room. After a grueling 24-hour wait, I was finally seen by a neurologist who gave me a tablet of Mestinon. It felt like a miracle drug.

Despite the breakthrough, they scheduled my next appointment for three months later and gave me a prescription for only one pill a day. After just a couple of weeks, that single pill was no longer sufficient, but the office refused to see me earlier.

Finding the right treatment

A friend thankfully recommended a neurologist a hundred miles away. This doctor correctly diagnosed me with Myasthenia Gravis (MG) and immediately increased my medication.

The initial medication was awful, causing uncontrollable diarrhea and making my traveling job impossible. After undergoing plasmapheresis and many follow-up visits, the neurologist put me on Azathioprine (an immune blocker) and 5 mg of Prednisone.

Since then, I have found a local neurologist and have lived a normal life for several years without any symptoms or consequences from Myasthenia Gravis. I was astonished that people continued to take Mestinon, but my neurologist explained that not everyone responds as well as I did to the immune-blocking therapy.

Prayers for you and everyone living with this terrible disease.