Myasthenia gravis (MG) is often called the “snowflake disease” because, like unique snowflakes, it shows up differently in each person — and even in the same person at different times. If you’re living with MG, recognizing the symptoms that may affect you is important. Here’s what you need to know about how myasthenia gravis can appear in different people.

In the United States, more than 70,000 people live with MG — that’s between 15 and 20 out of every 100,000 people. While it’s still classified as a rare disease, MG affects a significant number of people who navigate its symptoms every day.

Myasthenia Gravis Has a Wide Range of Symptoms

MG is an autoimmune disease that develops when the body’s immune system mistakenly blocks nerve signals to the muscles. This makes muscles weaker and can lead to many problems in the body. MG doesn’t cause a lack of muscle strength in all your muscles at once, so you’re likely to see different symptoms at different times.

Some symptoms are more common, like drooping eyelids, double vision, and problems with the muscles in your mouth. However, other symptoms, like brain fog, are more rare. No single symptom always means a person has MG. This is why people can have very different experiences with the same condition.

Myasthenia Gravis Can Vary in Severity

People with MG can have symptoms that range from mild to severe, and the severity can vary from person to person. About 10 percent of people with the condition will experience a myasthenic crisis. When this happens, a person has sudden weakness in the muscles involved in breathing — including muscles in the throat, lungs, or mouth. They may need help breathing until the body can recover.

However, 90 percent of people with MG never experience this level of severe breathing trouble. Some may have weakness in their eyelid muscles, while others have stable symptoms that don’t become serious.

Myasthenia Gravis Symptoms Can Change

MG symptoms get worse when you use the affected muscles a lot and improve with rest. This means someone may start the day without symptoms but develop them as the day goes on. If you do something more than usual — like reading — you might notice your eye muscles feeling much more tired than normal if they are affected.

If you do different activities throughout the day, some muscle groups may get tired at different times. This can make your symptoms seem like they’re always changing, even though they have the same cause. Similarly, if you start a new job with different tasks, you might notice a different set of symptoms than you did before.

Myasthenia Gravis Can Strike at Different Ages

According to the National Organization for Rare Disorders, MG tends to show up at different ages for women versus men. In women, it usually shows up when a person is under 40 years old. For men, it usually shows up when they’re in their 50s or 60s. Researchers don’t know why this difference exists.

To make it even more confusing, MG can show up outside of these age ranges. Older women can develop it, as can younger men. This is another reason why MG often looks different in everyone.

Myasthenia Gravis Treatments Work Better for Some People

Although there’s not a cure for MG, there are quite a few treatment options that you and your healthcare provider can try. Each of these options will be more effective for some people than for others.

This shows up in the comments members make at MGteam. For instance, one shared, “I just had five intravenous immunoglobulin (IVIG) treatments, which did basically nothing to improve my mobility, or my MG, in general.” However, someone else said, “IVIG treatments completely changed my life. After 3 years, I finally have treatment and an official diagnosis.”

A treatment that works wonders for one person may not help another at all. This is yet another reason why MG is known as a unique, snowflake disease.

Myasthenia Gravis Can Go Into Remission

Some people who live with MG will eventually go into remission. Others won’t. Going into remission means that all of your symptoms of MG disappear, usually for a few years. In some cases of myasthenia, removing the thymus gland in a procedure called a thymectomy may help the disease go into permanent remission. The possibility of remission is another difference that makes everyone’s journey with MG look different.

Talk to Your Doctor

If you think you have symptoms of MG, talk to your doctor or neurology provider soon. Whether or not you’ve been diagnosed before, getting the right diagnosis is important so you can find a treatment that works for you.

MG can be hard to diagnose, partly because of how differently it appears in different people and also because its symptoms can look like those of other conditions. If you think you might have MG or your symptoms are changing, talk to a neurologist. Getting the right treatment can help you feel better as soon as possible.

Find Your Team

On MGteam, the social network for people with myasthenia gravis and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with myasthenia gravis.

Have you heard of myasthenia gravis being called the “snowflake disease”? How does it show up uniquely for you? Share your experience in the comments below, or start a conversation by posting on your Activities page.