Your eyelid droops by dinnertime. Your voice fades mid-sentence. By morning, you feel fine again. You suspect you may have myasthenia gravis, an autoimmune disease that causes muscle weakness. Unfortunately, it can take a long time to get an official myasthenia gravis diagnosis.

In one study, the average wait for a myasthenia gravis diagnosis was 331 days — almost a year. In a separate survey, about 3 in 10 people said they spent at least three years waiting for a final diagnosis.

According to Frontiers in Neurology, women often wait longer for a myasthenia gravis diagnosis than men. Women and people from racial and ethnic minority groups also reported needing to see more healthcare providers before getting to a diagnosis.

🗳️ How long did it take you to get a diagnosis of myasthenia gravis?

I was diagnosed within a year

I was diagnosed within two years

It took three years or longer to get a diagnosis

I’m still waiting for a diagnosis

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There are ways to help speed up the diagnosis process and learn whether or not myasthenia gravis is part of the picture. This guide covers how to track your symptoms, which tests to ask about, and when to get a second opinion.

Track Your Symptoms in Detail

A clear record gives your doctor something solid to work with, so track your symptoms in detail. Keep consistent records over time.

Here’s what to write down:

• Which muscles are weak and how they affect you — Does the weakness affect your eyelids, eyes, face, neck, arms, legs, or voice? Does it affect your ability to chew, breathe, or swallow?
• When the symptom happens and whether it gets better with rest — Note whether it’s worse late in the day or after activity.
• What you were doing when the symptom started — Reading, chewing, and climbing stairs are common examples.
• Which triggers seem to make symptoms worse — Common myasthenia gravis triggers like stress or illness may provide clues.

Take photos and short videos when you’re experiencing symptoms, too.

Keep your notes short enough to hand over at an appointment. A one-page summary works well, since appointments are often rushed. List your three biggest concerns at the top.

Symptoms can disappear between visits. In some studies, people whose diagnosis had been delayed had symptom-free periods more often than those who got an earlier diagnosis. A log can ensure that symptoms that come and go aren’t missed, even if you have good days.

Loved ones can help with tracking, too. Bring a friend or family member to appointments to take notes and share what they noticed.

Even details like the fact that symptoms come and go or change over time are helpful, since myasthenia gravis affects each person differently. This is why myasthenia gravis is known as the snowflake disease.

“I was diagnosed with MG after plastic surgery to fix a drooping eye didn’t work. Thereafter, it gradually came to include weakened arm and leg muscles.”

— An MGteam member

Ask About Differential Diagnosis

A differential diagnosis is the process doctors use to rule out conditions that look alike. Myasthenia gravis shares symptoms with many other conditions, so a differential diagnosis can be important. Misdiagnosis is a real risk.

In one study, people with unusual myasthenia gravis symptoms had previously been told they had conditions like muscle disease or rheumatic disease (conditions that affect joints and muscles). According to the study, about 6.9 percent of people eventually diagnosed with myasthenia gravis had unusual symptoms that could be mistaken for signs of other conditions.

Myasthenia gravis can cause breathing trouble or unusual eye symptoms, which can make a diagnosis less clear.

Tell your doctor about every symptom, even ones that seem unrelated. Then ask your doctor, “What else could this be? How would we rule out each possibility to get a diagnosis?”

Get a Second Opinion

If you’re still stuck, it’s OK to ask for another perspective. People who had delayed diagnoses were referred to specialists later than those who got more timely diagnoses. Hard-to-reach specialists and providers who know little about myasthenia gravis were also reasons for delay.

A neurologist — a doctor who treats conditions of the brain and nerves — is often the right next step. Ask your primary care doctor for a neurology referral. You can also ask whether a neuromuscular specialist (a doctor who focuses on nerve and muscle disorders) is available.

A stroke specialist may also be able to help. Some research suggests that seeing this type of specialist might speed up a myasthenia gravis diagnosis for some people.

When you meet with a new specialist, ask how often they see people with myasthenia gravis. Experience matters. Myasthenia gravis can look like other conditions, so a skilled clinician who recognizes the differences is key to getting the diagnosis right.

Bring your records to every visit. Researchers have suggested that giving all your healthcare providers access to your medical records could help speed up a diagnosis.

Keep Documenting and Keep Asking

A diagnosis can take time, but persistence pays off, and your efforts count. Keep your symptom log going. Add notes after each visit, including what was said and what your provider ordered.

Whether you’re experiencing fatigue, muscle weakness, or something else, your symptoms are real — even if a test hasn’t detected the cause yet. Writing them down helps you trust what you already know.

Stay calm and specific. You can be polite and still firm. Try, “Here’s what I’ve noticed, and here’s what worries me.”

You know your body best. Keep asking until the answers make sense.

It also helps to talk with others who have been through it. Hearing from those on a similar path can make you feel less alone.