What is an MG-ADL score?

Even if you don’t know it by name, you might already be familiar with the myasthenia gravis activities of daily living (MG-ADL). This tool tracks myasthenia gravis symptoms by evaluating how MG has affected your daily life over the past week. Your MG-ADL score is the sum of your answers, ranging from 0 to 24, and it gives you and your neurologist a shared way to track how your symptoms change over time.

Because the MG-ADL is a scale, you might feel tempted to focus solely on your final point total. However, the MG-ADL isn’t a test that you can pass or fail, and the results offer much more than just a single number.

So what is MG-ADL really for? It provides a practical way to start a conversation with your care team about how MG is affecting you.

What does the MG-ADL scale measure?

The MG-ADL is an eight-item questionnaire about how MG has affected your daily activities over the past week. The items assess speech and eating, breathing, arm and leg strength, and the eyes:

0 = normal; 3 = cannot perform that function at all.

How is an MG-ADL score calculated?

To calculate your MG-ADL score, think about your symptoms over the past seven days rather than only how you feel today. With MG-ADL scoring, you will assign each item a rating from 0 (normal) to 3 (cannot perform that function at all). Then, you’ll add these up to get a total score of 0 to 24. The higher your score, the more MG is affecting your daily life.

Each item carries equal weight in the final score. For example, a score of 3 for breathing and a score of 3 for eyelid droop will each increase your total score by the same amount.

The MG-ADL scale is a patient-reported measure, meaning the answers come from you rather than from a clinician’s exam. You may fill it out on your own or answer the questions aloud while a member of your care team records your responses. Either way, only count symptoms you believe stem from MG, not from other health conditions. You can (and should!) bring your results to appointments so you can discuss them with your doctor. The MG-ADL usually takes less than 10 minutes to complete.

What does a change in my score mean?

A change of at least 2 points is generally considered clinically meaningful, while smaller shifts may simply reflect the normal ups and downs of MG. Research and clinical trials commonly use a 2- or 3-point shift as an indicator of meaningful change in a patient’s condition, according to a 2022 review. The same review lists a score of 0 or 1 as indicating minimal symptom expression, meaning MG does not significantly impact your daily activities.

However, the review notes that the Food and Drug Administration provides no strict guidance on threshold scores. Consequently, no one-size-fits-all number exists in MG-ADL score interpretation that automatically indicates a crisis, remission, or need to change treatment. Rather, your MG-ADL score is just one part of a larger conversation with your neurologist, alongside a clinical exam and any symptoms the scale may omit.

“For a long time, doctors tried to explain MG to me by using neat little boxes: ocular, generalized, mild, severe. Those labels might look tidy on paper, but they never quite fit real life. MG is too slippery for that. It shifts hour by hour, day by day, year by year.”

— Shawna Barnes, “MG age and MG stage echo what patients have been saying all along”

How can I use MG-ADL to track treatment?

To get the most accurate score and a clear picture of your MG-ADL treatment response:

• Calculate your score on the same day each week. Scoring yourself only on days when you feel particularly bad or good can skew your perception of your progress. Logging your score consistently every week provides a reliable week-by-week comparison.
• Note your position in your treatment cycle each time you complete the survey. This detail is particularly important if you use a treatment administered in cycles longer than one week.
• Bring your logs to every neurology appointment. These records give your neurologist a quick, clear picture of your progress since your last visit.

Track your score on each individual item rather than focusing only on the total. Detailed ratings provide clearer evidence for your neurologist. For example, saying “my swallowing improved, but my eyelid droop worsened” provides much better clinical insight than “my total score changed from 6 to 8.”

“Soon after I was diagnosed with myasthenia gravis (MG), my neurologist told me that keeping track of my symptoms could be an important factor in successfully treating it. She recommended I keep a daily journal.”

— Mark Harrington, “I was skeptical of keeping an MG journal, until I found the right one”

What can the score miss?

The MG-ADL evaluates only eight symptoms and activities, weights them equally, and relies on self-scoring. It can easily miss less common symptoms or overlook issues that have an outsized impact on your life. For example, fatigue does not appear on the scale. Because every item counts equally, a worsening breathing score can be canceled out by an improving eyelid score, leaving your total unchanged. Remember that the survey represents just one part of tracking MG symptoms.

Ways to maintain a complete view of your overall health include:

• Track unlisted symptoms: Record issues like fatigue or muscle pain in a journal, a symptom-tracking app, or your phone notes.
• Track changes in individual symptom scores: Monitoring each item helps you spot shifts that a steady total score might hide. Sharing these specific details gives your neurologist far better insight than simply reporting that your score went up or down.
• Share your broader daily experience: Use the MG-ADL to start conversations with your care team, but describe your overall quality of life rather than treating the score as an exhaustive summary.