When people first learn about myasthenia gravis (MG), they usually hear about muscle weakness. But members of MGteam know the condition can affect far more than that, including vision, breathing, speech, swallowing, and energy levels.

Thanks! You've successfully submitted your vote.

Sign up to view the results!

Continue with Facebook

Continue with Google

Continue with your email

By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data and Privacy policies.

Already a Member? Log in

MGteam members shared more than 100 answers to the question “Which Myasthenia Gravis Symptom Surprised You the Most?” Their experiences show how MG can show up in ways that aren’t always talked about.

Here are five MG symptoms members say took them by surprise, in their own words.

1. All-Consuming Fatigue

Many MGteam members said fatigue was not just tiredness, but that it was deep, persistent, and life-altering. “I’ve been tired before, as most of us have, but this is debilitating,” said one member.

Others shared how weakness and exhaustion blend together: “Fatigue. I feel so weak. My muscles have melted away. Can’t stand up for very long.”

For some, fatigue was closely tied to breathing: “The overall fatigue, especially with breathing issues it can cause.”

Why It Happens

Fatigue is common with myasthenia gravis and can stem from several factors. Because MG affects communication between nerves and muscles, everyday activities may require much more effort. Over time, that extra effort can leave people feeling drained, both physically and mentally. Breathing difficulties, sleep disruption, and the emotional toll of managing a chronic condition can all add to the exhaustion.

If fatigue interferes with your daily life, tracking when it’s worst and sharing that information with your healthcare provider may help guide supportive strategies.

2. Vision Problems That Disrupt Daily Life

Vision changes were one of the most unexpected and distressing symptoms for many members. “I have double vision that’s making me crazy,” one person shared.

Another MGteam member added that their double vision causes them vertigo (a sensation of spinning). A third said, in addition to double vision, they experience ptosis (drooping eyelids).

For some, vision problems were the first sign that something was wrong, and they didn’t always improve quickly. “My first surprise was ptosis and double vision. The double vision has subsided, but my eyesight is declining,” a member shared. (Note that fluctuating vision issues are common with MG, but true vision loss is not. Always talk to your doctor about noticeable vision loss.)

Why It Happens

Myasthenia gravis often affects muscles that control eye and eyelid movement. This can lead to double vision or drooping eyelids, symptoms that may fluctuate throughout the day and can worsen with activity or fatigue.

Vision changes can affect reading, driving, balance, and confidence. If you notice new or worsening eye symptoms, let your care team know, especially if they affect your safety or independence.

3. Muscle Weakness That Comes On Quickly

While muscle weakness is a hallmark of MG, many members were surprised by how fast it could appear — or how unpredictable it felt. “I was most surprised at how quickly my arms and legs would weaken at certain times,” a member shared.

Others said:

• “Neck weakness and feeling like I have a bobblehead.”
• “Mostly muscle weakness in arms and legs.”
• “Having trouble walking.”

Why It Happens

In myasthenia gravis, muscle weakness often worsens with use and improves with rest. This pattern can make symptoms feel inconsistent or sudden. Weakness in larger muscle groups, such as those in the arms, legs, and neck, may be especially noticeable when it interferes with walking, holding objects, or keeping the head upright.

If muscle weakness is changing or spreading, keeping a symptom log may help you and your healthcare provider identify patterns and next steps.

4. Breathing Issues That Can Be Scary

Breathing problems were among the most frightening surprises members described. “For me, it was shortness of breath leading to a crisis a few weeks ago,” one person shared.

Others connected breathing difficulty with fatigue and chest muscle weakness. “My problem has been the muscles around my lungs,” a member shared.

Why It Happens

MG can weaken the muscles involved in breathing, including those that help move air in and out of the lungs. Breathing may feel shallow, labored, or exhausting, especially during activity or illness.

Breathing symptoms should always be taken seriously. If you notice shortness of breath, trouble catching your breath, or changes in your breathing pattern, contact your healthcare provider. If breathing becomes severely limited, contact emergency services immediately.

5. Speech and Swallowing Difficulties

Problems with swallowing and speaking were another symptom MGteam members didn’t expect, and one that could deeply affect identity and daily interactions.

“I have increasing loss of speech, which for a preacher is probably a blessed gift to the masses,” one MGteam member said.

“Slurred speech and difficulty getting words out. MG affects my tongue,” another member shared.

Why It Happens

MG can affect the muscles involved in speaking, chewing, and swallowing. Speech may sound slurred or soft, and eating or drinking may become difficult. These changes can affect social interactions, work, and nutrition.

Join the Conversation

On MGteam, people share their experiences with myasthenia gravis, get advice, and find support.

What symptoms of MG surprised you the most? Share in the comments below.