This rare autoimmune disease affects tens of thousands of Americans. A Texas farmer shares his journey to addressing it.
About the expert
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Highlights
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Myasthenia gravis is an autoimmune neuromuscular disease that can dramatically affect someone’s daily life. The Myasthenia Gravis Foundation of America cites research suggesting that about 37 out of every 100,000 people in the U.S. are living with MG, though the true number may be higher since it often goes undiagnosed for months—or even years.
The name comes from Latin and Greek roots: myasthenia meaning “muscle weakness” and gravis meaning “serious.” True to its name, the condition causes fluctuating muscle weakness that can interfere with activities as basic as walking, talking, swallowing, and even breathing.
What is Myasthenia Gravis?
Since myasthenia gravis is an autoimmune disease, that means the body’s immune system mistakenly attacks its own tissues, says Raghav Govindarajan, MD, a board-certified neurologist who serves on the Conquer MG Medical Advisory Board.
Under normal circumstances, nerves send messages to muscles through a chemical called acetylcholine, which helps them contract. “In myasthenia gravis, antibodies block the receptor on the muscle to which acetylcholine binds,” Dr. Govindarajan says. “This prevents muscles from receiving the signals they need to work properly, leading to weakness in muscles that control movement, breathing, and vision.”
Myasthenia gravis, sometimes simply called “MG” by those familiar with it, can affect people of any age, but it has two interesting data points: it is more common in women under the age of 50, and after age 50 it becomes slightly more common in men.
How do doctors diagnose it?
“We use a combination of approaches to diagnose myasthenia gravis,” explains Dr. Govindarajan. “We confirm this through a simple blood test that checks for specific antibodies.”
If results are inconclusive, neurologists may turn to repetitive nerve stimulation, which measures how a muscle responds when repeatedly activated. In rare cases, a single fiber electromyography (EMG)—considered the gold standard—may be used. Penn Medicine describes this as “a specialized diagnostic technique used to assess the function of individual muscle fibers.”
“Usually,” Dr. Govindarajan says, “the combination of medical history, physical exam, and blood test is enough.”
Myasthenia Gravis treatment options
Once diagnosed, treatment focuses on reducing symptoms and preventing MG flare-ups. According to Dr. Govindarajan, traditional therapies have included:
- Prednisone and other immunosuppressants such as mycophenolate and azathioprine to calm the immune system.
- Pyridostigmine, which prolongs the effect of acetylcholine, giving temporary symptom relief.
- Thymectomy (surgical removal of the thymus gland), which can reduce disease severity in some patients.
In the past decade, though, options have expanded dramatically. “Since 2018, we’ve seen a surge in new treatment options,” Dr. Govindarajan says. “ZILBRYSQ, for example, is a once-daily subcutaneous injection that inhibits complement activity, helping manage symptoms.”
Another group of drugs, called FCRN inhibitors, work by lowering harmful antibody levels. “Both complement inhibition, as seen with ZILBRYSQ, and FCRN inhibition are among the latest approved treatments for myasthenia gravis,” he adds.
What’s ahead for treatment
While there is no cure for myasthenia gravis, researchers continue to explore new pathways to control the immune response more precisely and with fewer side effects. Clinical trials are underway to study additional complement inhibitors and other immune-targeted drugs that could broaden treatment options in the coming years.
Ahead, a 75-year-old man named Albert, who is a farmer and choir director from the greater Austin area in Texas, details his 1.5-year-long search for a diagnosis, and how treatment helped him regain independence.
How I Knew I Had Myasthenia Gravis
By Albert Stowell, 75, as told to Dr. Patricia Varacallo, DO
My journey with generalized myasthenia gravis (gMG) began around Easter of 2014. This form of MG doesn’t affect just one area of the body—it causes weakness across multiple muscle groups.
I started to experience choking episodes, slurred speech, double vision, and muscle weakness. These symptoms significantly impacted how I worked on my farm. Things that once came naturally, like managing livestock or operating machinery, suddenly became difficult. I had to rethink how I could continue my livelihood. It was a very difficult time.
A long road to answers
What followed was a year and a half of uncertainty. I saw seven different neurologists and went through more tests than I can count. Each appointment made me hope that I’d finally get an answer—only to leave with more questions.
In October 2015, I finally met a neurologist who specialized in autoimmune diseases. He, too, noticed my slurred speech and a specific pattern in my voice and ordered bloodwork. (I’ve learned that some vocal symptoms can be vocal fatigue, hoarseness or a weak or strained voice, monotone delivery or reduced ability to change pitch, or a hypernasal quality.)
When the bloodwork came back, the neurologist confirmed that I had generalized myasthenia gravis. I didn’t really know what it meant, but at that moment it was a relief to finally put a name to what I was experiencing.
Adjusting to new mental and physical challenges
Living with gMG felt like stepping into a dark tunnel. The physical weakness was difficult enough, but the mental strain was just as heavy. Before symptoms appeared, I directed a dozen choirs in my community. Music had been such a joy, but with myasthenia gravis affecting my vocal cords and breathing, I couldn’t continue. Giving that up was one of the most painful losses from the whole experience. Unless you’ve lost your health, it’s hard to understand how deeply it changes you.
Fatigue became another hurdle. Even daily chores were exhausting, and driving was out of the question. Holding the steering wheel would make my arms burn. I felt isolated, as if my independence was slipping away. Still, with the support of my family and my medical team, I kept moving forward.
Finding a treatment that works
The first treatments I tried didn’t help much. But in 2020, I entered a clinical trial for zilucoplan. For me, it was like spotting a light at the end of that dark tunnel. Today, the same medicine—now approved as ZILBRYSQ—is part of my care plan. What makes it especially helpful is that I can administer it myself at home. That saves me the long drives to specialists and lets me manage my condition without it taking over my day.
My life with Myasthenia Gravis today
I try to take life one day at a time. Flare-ups still happen, but I push through with the encouragement of my family and medical team. My grandchildren bring me joy—they remind me to focus on resilience, adaptability, and the everyday moments that matter most.
Support has been my lifeline. My doctors, my loved ones, and the simple pleasures of farm life keep me grounded. Today, my symptoms are under control. I can once again enjoy time with my family, handle daily tasks, and find meaning in my routines.
My advice to others
If you’re newly diagnosed with gMG, my biggest advice is to talk openly with your doctor. Learn everything you can about the disease and the treatments available. Knowledge is power—it allows you to be an active partner in your care. Find a specialist who truly understands autoimmune conditions.
The road may be tough, but don’t give up. New therapies are emerging all the time, and with perseverance, there’s real hope for a better quality of life.
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