Myasthenia gravis is often called the “snowflake disease” because no two people experience it the same way. Like snowflakes, each person’s symptoms, treatment response, and disease course can be unique.

Keep reading to learn more about how myasthenia gravis got its unique nickname.

Why Does Myasthenia Gravis Affect People Differently?

One reason myasthenia gravis is known as the snowflake disease is that symptoms can vary widely from person to person.

As an autoimmune disease, myasthenia gravis causes your immune system to make abnormal antibodies that disrupt signaling at the neuromuscular junction. This is where nerves send messages to muscles. An estimated 116,000 people in the United States live with myasthenia gravis, making it relatively rare.

Some people first notice drooping eyelids or double vision. Others may develop weakness that affects speaking, chewing, swallowing, facial expressions, or arm and leg movements. Symptoms can involve different muscle groups and may change over time.

How Do People With Myasthenia Gravis Describe Its Effects?

Members of MGteam often describe how different their experiences can be, highlighting that no single symptom pattern applies to everyone with myasthenia gravis.

“I’m in the early stages of MG,” one member shared. “I have droopy eyes, and when I’m stressed, my speech is impaired. But any muscle weakness in my arms and legs is very mild at the moment.”

Another added, “At first the main problem was my facial and throat muscles — I kept choking. It wasn’t long before various muscles were weak, and I could no longer do routine jobs at home.”

Some people with myasthenia gravis also report experiencing issues such as mental fatigue or difficulty concentrating. A member even wrote, “A lot of pain, brain fog, headaches, and confusion. I can’t sleep because of stress and pain.”

Researchers continue to study these cognitive symptoms, but they’re not considered among the main physical symptoms used to diagnose myasthenia gravis. Common myasthenia gravis symptoms primarily involve muscle weakness that worsens with activity.

Do Myasthenia Gravis Symptoms Change From Day to Day?

A hallmark of myasthenia gravis is that symptoms often fluctuate, or change, throughout the day, week, or even month.

Muscles affected by myasthenia gravis usually weaken with repeated use and improve after rest. As a result, someone may feel relatively strong in the morning but notice increasing weakness later in the day.

How Do People With Myasthenia Gravis Describe Their Symptom Changes?

“I’ve been dealing with generalized MG for a year. I’m easily fatigued and have muscle weakness in my legs that gets progressively worse as the day passes,” explained someone on MGteam.

“My best time is in the morning because as the day progresses, my body gets weaker. My arms, legs, shoulders, hips, voice, swallowing, and chewing are affected and get weaker. By the evening, I am down to a whisper when talking,” described a member. “My advice is do your activities in the morning, and when you start to feel the heaviness and weakness, that’s when you need to sit and rest.”

“Over time, I learned to take the day as it comes. If I have strength when I get up, I do what I can and then rest. When I’m planning something, be it grocery shopping or a meeting, I rest the day before and plan on resting the day after,” suggested another member.

Fluctuations in symptoms can make living with myasthenia gravis especially challenging because symptoms don’t always follow a predictable pattern.

Why Do Myasthenia Gravis Treatments Work Differently for People?

Although there’s no cure for myasthenia gravis, you and your healthcare provider can try several treatment options. No single approach works for everyone, and some options may work better for some people than others.

Treatment plans may include medications, infusions, surgery, or a combination of therapies. Each treatment’s effectiveness can vary based on factors such as a person’s age, symptom progression, and disease severity.

MGteam members often describe very different treatment experiences, too. 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.”

On the other hand, another member wrote, “IVIG treatments completely changed my life. After 3 years, I finally have treatment and an official diagnosis.”

These different outcomes show why treatment decisions are often highly individualized.

When Should You Talk To a Doctor About Myasthenia Gravis?

If you think you may have symptoms of myasthenia gravis, or if existing myasthenia gravis symptoms are changing, talk with a healthcare provider or neurologist.

Myasthenia gravis can be difficult to diagnose because its symptoms vary widely and can resemble those of other health conditions. An accurate diagnosis is an important first step toward effective treatment and symptom management.