Living with myasthenia gravis can make “How are you feeling?” a surprisingly difficult question to answer. Your myasthenia gravis symptoms may change from one day to the next, improve with rest, or get worse with illness or stress. The Myasthenia Gravis Activities of Daily Living (MG-ADL) score offers a consistent way to measure and track symptoms over time.

Tracking symptoms can help you and your doctor see patterns that may be hard to remember during an appointment. The MG-ADL is an easy tool designed to measure how myasthenia gravis symptoms affect everyday activities.

This article will explain why tracking myasthenia gravis symptoms matters, how the MG-ADL works, and how you and your doctor can use it to follow changes in symptoms and measure how well treatment is working.

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Why Is It Important To Track Myasthenia Gravis Symptoms?

Myasthenia gravis doesn’t always follow a steady path. Keeping a record can give you and your healthcare team a clearer picture of whether your symptoms are stable, improving, or becoming more troublesome.

Myasthenia Gravis Symptoms Can Change Over Time

Myasthenia gravis muscle weakness may come and go. Symptoms often improve after a weak muscle rests but return or worsen when the muscle is used again. People with myasthenia gravis often feel strongest earlier in the day, with weakness worsening as the day goes on.

Symptoms can also progress, especially during the earlier years of the condition. Some people develop worse symptoms one to three years after diagnosis.

Some people have periods of remission, meaning their symptoms improve greatly or disappear for a time. Myasthenia gravis remission can be temporary or permanent.

Because symptoms can fluctuate, one good or difficult day may not tell the whole story. Regular tracking can help show how your symptoms are changing over days, weeks, and months.

Tracking Can Help Guide Treatment

Tracking your symptoms over time can help you and your healthcare team see how well your medications are controlling myasthenia gravis and whether side effects are becoming a problem. Your doctor may use changes in your MG-ADL score, along with other clinical information, to decide whether your medication dose or treatment plan should be adjusted.

If your myasthenia gravis remains well controlled for a period of time, your doctor may consider gradually reducing certain medications while continuing to monitor your symptoms.

Symptom Records May Help With Disability Claims

Tracking may also be useful if myasthenia gravis affects your ability to work and you apply for disability benefits. For U.S. Social Security disability claims, medical evidence is central to the decision, but officials also consider information about how symptoms affect daily activities and work-related abilities.

Officials may consider details such as:

• How often symptoms occur
• What makes them worse
• Medication effectiveness and side effects
• Limits on activities such as standing, walking, lifting, speaking, or using your hands

An MG-ADL record isn’t proof of disability by itself. However, a dated history of scores and symptoms may help you describe how myasthenia gravis affects daily function. If you’re applying through Social Security or a private disability plan, ask what documentation that specific program requires.

What Is the MG-ADL Score?

The MG-ADL is an eight-item questionnaire that looks at myasthenia gravis symptoms and their effect on everyday function.

Each area receives a score from 0 to 3. A 0 means no difficulty in that area, while higher numbers reflect greater difficulty. The eight scores are added for a total between 0 and 24. A higher total reflects more severe myasthenia gravis-related limitations.

You can also learn more about how MG-ADL scores relate to treatment goals, including what it means to have minimal symptoms.

Doctors generally ask about symptoms during the previous week. This short recall period can make it easier to compare one assessment with another. Here’s a simplified version of the table:

A two-point decrease in MG-ADL score has been shown to reflect meaningful clinical improvement in people with mild to moderate myasthenia gravis. Evidence is less clear about whether the same cutoff should be used for severe myasthenia gravis, so your doctor will consider the score along with the rest of your health.

How Can You and Your Doctor Use the MG-ADL?

The MG-ADL is useful because it’s easy, quick (taking less than 10 minutes), and sensitive to changes in myasthenia gravis. Research has shown that its scores correspond with other measures of myasthenia gravis severity, and doctors can repeat it regularly to see how symptoms and daily function change over time.

What matters most is looking at the score as part of a pattern rather than treating one number as a complete picture of your myasthenia gravis.

Your Doctor May Use the MG-ADL at Visits

Healthcare professionals can administer the MG-ADL as part of routine myasthenia gravis care. Because it asks about daily activities, the scale can capture information that may not be obvious during a brief physical exam.

Bringing previous scores can help you talk about what has changed since your last visit. Tell your doctor which individual areas changed, too. A total score alone won’t show whether the difference came from more trouble swallowing, more double vision, increased difficulty getting out of a chair, or another symptom.

You Can Track Symptoms at Home

The scale is usually used by a doctor or trained clinical personnel, although there is evidence supporting patient self-administration of the MG-ADL in clinical practice and research. So, you can also download and complete the MG-ADL yourself, but make sure to discuss the results with your doctor for interpretation.

A phone app can make tracking easier. The Myasthenia Gravis Foundation of America’s MyMG Mobile App lets you record myasthenia gravis symptoms and their severity over time, track treatments and doses, and show symptom graphs to healthcare professionals. The MyMG app is currently available through both Apple’s App Store and Google Play.

One member of MGteam explained that they use the MG-ADL to know if they’re headed toward a disease flare. They said, “Filling out your MG-ADL scale daily will help you to know if you’re close to having a flare-up, and you can communicate it to your neurologist.”

“Filling out your MG-ADL scale daily will help you to know if you’re close to having a flare-up, and you can communicate it to your neurologist.”

— An MGteam member

Whether you use an app, paper form, or notebook, try to use the same method consistently so changes are easier to discuss at appointments.

Make a Symptom-Tracking Plan With Your Doctor

Ask your doctor how often they’d like you to complete the MG-ADL and what kind of change should prompt you to contact the office. You can also ask whether they want you to record other details, such as medication changes, treatment side effects, possible triggers, or symptoms that aren’t covered by the scale.

Bring your scores or app history to appointments and point out changes in individual activities, not just the total. A shared tracking plan can give both you and your healthcare team a clearer record of how myasthenia gravis is affecting your daily life.

When To Get Emergency Care

The MG-ADL is only a tracking tool, not an emergency test. Severe breathing problems, severe choking or swallowing problems, or weakness that leaves you unable to walk or talk need immediate medical attention.