Community Perspectives on MG Symptoms
Myasthenia gravis (MG) is a condition that causes muscle weakness. But weakness is not the only symptom of MG. In fact, it can be hard to diagnose MG because the symptoms can change, and they vary from one person to the next.1
Although there are treatments and strategies to help manage its symptoms, MG still impacts quality of life. And coping with the unpredictable nature of MG symptoms can be a real challenge.
Coping with the symptoms
At Myasthenia-Gravis.com, we aim to support all people living with MG as they navigate symptoms, no matter where they are in their MG journey. Read more below for just a few of the varied perspectives of community members and Community Health Leaders impacted by vision problems, MG pain, fatigue, and speech issues. Share your support or your own story by clicking the "Read the full story" buttons and leaving a comment!
Vision problems
"For some reason, double vision is the hardest symptom for me to manage. I say double-vision, but for me it’s more like an intoxicated vision after drinking."
"I experience my eyelids sagging (at times they are completely closed), double vision, cross-eyes, eyeball shaking, and light sensitivity. Additionally, there is lazy eye or wandering eyeball, and the blurriness that is always there."
"I had several lengthy double vision outbreaks. . . . I'm talking about 6 weeks at a time when I had to either wear a patch over one eye to see normally or tilt my head back to see the world looking down (the only direction in which I wasn't seeing double)."
Muscle pain and cramping
"I have neck, shoulder, arm, and hand pain. The pain is located mostly in my neck on both sides. It radiates to the shoulders and arms. Usually, the pain stops at the elbow, but sometimes it does involve my forearms, hands, and fingers, too."
"I have noticed leg cramps every night since having MG. . . . They keep me up a lot of the night. They feel like shin splints but from my upper thighs to my feet. I was hoping once I was off of the Mestinon that the cramps would stop, but that was not the case."
"Any time a muscle cramped, the spasms would set in. This occurred in the small and large muscles. It would go on for hours – even days – and jump all over between muscles."
Fatigue
"One of the hardest parts of dealing with myasthenia gravis is fatigue. Especially never knowing when it's going to hit or not knowing how long that fatigue is going to last."
"Looking back, things already changed for me: I started to not comb my hair in the morning, the slurred speech at night, the fatigue, and how it was hard for me to climb stairs."
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View all responsesSpeech issues
"I worry my speech problems impair the message I am trying to get across during conversation. Was the person I spoke to too distracted by my slurred speech to focus on what I was saying? What did they think when I corrected myself or paused to get the words out?"
"Some of my friends and former coworkers came to visit me. I was talking to them when all of a sudden all I could put out was gibberish. My first reaction was to feel embarrassed, then more anxiety set in."
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