How life changed after my myasthenia gravis diagnosis

(Photos courtesy of Charles Boyd)

This is Charles Boyd’s story:

I have had two lives. Before myasthenia gravis (MG) changed everything, I was a hardworking, nonstop kind of guy. I worked a full-time job and I worked hard at a food pantry on my days off. After MG changed my world, I went to visit that same pantry, and the effort it took to walk into the place triggered a myasthenic crisis, and an ambulance had to be called.

Charles before MG.

As the effects of MG started hitting me, it eventually got to the point where I couldn’t handle the effort of a desk job. I was so exhausted that I couldn’t leave my desk for lunch. I had to lay my head down because the break room was too far — a whole 60 feet away. Oct. 24, 2017, was my last day of work.

At that point, we started intensifying our search for a doctor who could tell me what I had. Without a diagnosis, I couldn’t be treated properly. A wonderful hematologist was helpful in many ways. However, he had no real answers, so he referred me to the Mayo Clinic. We made the 600-mile drive each way twice. I was pingponged around and left both times with no diagnosis.

I came home incredibly depressed. Between that and my untreated disease, I barely had the energy or will to eat. I had two visits within nine days with my primary care physician, and in that time, I had lost 12 pounds. Looking back, I now realize that one saving grace for me was that I was too tired to really understand that I was dying.

Charles today, after losing 100 pounds.

I finally got to see a local neurologist. He had no idea what was going on with me, but he did something that made a huge difference: Because I had extreme double vision, he sent me to a neuro-ophthalmologist. She checked me out and wrote me a prescription for pyridostigmine. After trying it for two weeks, my double vision was measurably better. That’s the day someone finally wrote “myasthenia gravis” on my medical record.

Eventually we went to the University of Kansas Medical Center, and I got set up with regular infusions that have made a huge difference in my quality of life.

Today, I am far more functional and have a much better quality of life. I have good days and bad ones. If I push myself too hard, I pay for it over the following days. But that’s OK. I know what I’m dealing with, and I know what I need to do.

In the end, I learned that fighting hard can make a difference. It saved my life.

In recognition of Myasthenia Gravis Awareness Month in May, the MG Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by MG, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #MGSpotlight, or read the full series.