Understanding the MG Activities of Daily Living (MG-ADL) Scale and What It Means for Your Myasthenia Gravis Treatment

Myasthenia gravis (MG) is a chronic autoimmune neuromuscular disease that causes muscle weakness that worsens with activity and often fluctuates throughout the day. Symptoms may include drooping eyelids, double vision, difficulty speaking or swallowing, weakness in the arms or legs, and shortness of breath.

Because symptoms can change from hour to hour — a hallmark of MG known as fatigable weakness — doctors rely on standardized tools to measure how the disease is affecting daily life and whether treatment is working.

One of the most widely used tools is the Myasthenia Gravis Activities of Daily Living (MG-ADL) scale. This short questionnaire asks patients about common myasthenia gravis symptoms and how those symptoms affect everyday activities. Doctors use the results to better understand symptom burden, track changes over time, and evaluate whether treatments are helping.

The scale was created more than two decades ago to complement physician-based exams that measure muscle strength but do not always reflect how symptoms affect daily life.

“The MG-ADL scale was inspired by the idea that we should also capture the patient’s experience of myasthenia,” says Srikanth Muppidi, MD, a neuromuscular neurologist and researcher at Stanford Medicine in California. The scale measures patient-reported outcomes, meaning the answers come directly from the person with MG, not the doctor.

The MG-ADL questionnaire includes eight items that measure symptoms affecting common daily activities.

“These include things like seeing double because the eyes are not aligned; drooping of the eyelids; weakness in the arms or legs, especially shoulder or hip muscles; and problems with speaking, swallowing, chewing, or shortness of breath,” says Dr. Muppidi.

These symptoms fall into several functional categories:

Bulbar Symptoms

Bulbar symptoms affect muscles used for speaking, chewing, and swallowing.

• Talking Weakness in the muscles used for speech can cause slurred, nasal, or softer speech that worsens after prolonged talking.
• Chewing Jaw muscle weakness can make chewing tiring, especially with tougher foods like meat or raw vegetables.
• Swallowing Weakness in the swallowing muscles may make food or liquids harder to swallow and, in some cases, increase the risk of choking.

Respiratory Symptoms

Weakness in the respiratory muscles is considered the most severe manifestation of MG.

• Breathing Myasthenia gravis can weaken the muscles that help expand the lungs, causing shortness of breath or difficulty taking a deep breath.

Ocular Symptoms

These are problems with the muscles that control the eyes and eyelids.

• Double Vision (Diplopia) Double vision occurs when weakened eye muscles prevent the eyes from aligning properly, causing two images instead of one.
• Drooping Eyelids (Ptosis) Weakness in the muscles that lift the eyelids can cause one or both eyelids to droop, often worsening later in the day.

Limb Symptoms

MG typically causes a particular pattern of limb weakness.

• Difficulty Brushing Hair (Arm Weakness) Weakness in the shoulder and upper arm muscles can make overhead activities like brushing hair or reaching for objects difficult.
• Difficulty Rising From a Chair (Leg Weakness) Weakness in the hip and thigh muscles can make standing up from a seated position or climbing stairs harder.

The goal is to capture how MG symptoms affect everyday functioning, rather than measuring muscle strength directly.

Although the test has been shown to be a very good measure of MG symptoms, it isn’t perfect; it doesn’t capture every possible symptom, says Muppidi.

“For example, some patients develop significant weakness in the neck where their head falls forward. That can be very disabling, but it isn’t included in the MG-ADL scale,” he says.

Each of the eight questions in the MG-ADL is scored from 0 to 3 depending on symptom severity.

• 0: No symptoms.
• 1: Mild symptoms.
• 2: Moderate symptoms.
• 3: Severe symptoms.

The total score ranges from 0 to 24, with higher scores indicating greater symptom burden.

Even though myasthenia gravis symptoms can fluctuate significantly depending on the time of day or what you’ve been doing, you don’t have to take the test at a certain time of the day.

When rating symptoms, it’s important that patients include only symptoms caused by myasthenia gravis, says Muppidi.

“For example, if someone has difficulty getting up from a chair because of a hip problem rather than MG weakness, that should not be counted on the scale,” he says.

Neurologists use the MG-ADL score to track symptom severity and monitor how patients respond to treatment.

Because the questionnaire is quick to complete, it can easily be used during routine visits with your specialist.

Establishing a Baseline

Doctors often record an MG-ADL score when someone is first diagnosed or when a new treatment begins. This provides a baseline score that can be compared with future results.

“I usually recommend that patients start using the scale early in their disease journey or when they begin a new treatment. That gives you a good sense of where the symptoms are and allows you to capture change over time,” says Muppidi.

Looking for Changes Over Time

Repeating the questionnaire during follow-up visits helps doctors see whether symptoms are improving, worsening, or staying the same. Tracking changes over time is often more meaningful than focusing on a single score, says Muppidi.

Evaluating Treatment Changes

The MG-ADL score can help doctors assess whether a therapy is working.

Patient-reported scores also tend to align closely with physician assessments of disease severity, he says.

Defining Clinical Significance: The Two-Point Rule

In clinical studies, a two-point improvement in the MG-ADL score is considered a meaningful change and is often a standard to judge if a medication has effectively improved a symptom.

While this makes sense as an end point, Muppidi says that this benchmark isn’t something that most doctors use in the real world.

“In practice, it really depends on the individual. For example, if a patient previously had severe difficulty swallowing and regains the ability to eat safely, that change may be extremely meaningful even if other symptoms remain,” he says.

Muppidi also notes that there’s no unwritten rule that a two-point improvement in a symptom means the issue has been resolved. “It just tells us we might be moving in the right direction,” he says.

Although the scale was originally designed for clinic visits, many patients can complete it themselves once they understand how it works, says Muppidi.

It can give you and your doctor valuable information about how your myasthenia gravis is being managed.

Tracking Symptoms Over Time

Because myasthenia gravis symptoms fluctuate, a single score won’t tell the whole story.

“If symptoms are active or changing, it may be reasonable to complete the scale about once a week, and if symptoms are stable, it can be done less often,” says Muppidi.

Completing the questionnaire regularly allows you and your doctor to look for trends in symptom severity, rather than focusing on a single result.

Timing Your Assessment

Because the questionnaire reflects symptoms over several days, it is not necessary to complete it at a specific time of day.

“Patients should consider their overall symptom experience during the recent period when answering the questions,” says Muppidi.

Tracking Treatment Effects

Recording MG-ADL scores can help identify how symptoms respond to treatment.

Some MG therapies are given in cycles, and symptoms may improve after treatment and gradually return before the next dose.

Tracking scores over time can help reveal these patterns.

The MG-ADL scale can serve as a useful starting point for conversations with your healthcare team. Sharing symptom patterns or scores during appointments may help your doctor better understand how myasthenia gravis is affecting your daily life.

Muppidi recommends that people record their most problematic symptoms whether they are on the scale or not. “These should be discussed with your doctor at your appointment,” he says.

It’s also important to discuss any challenges sticking with treatment, including side effects or medication schedules.

Bottom line: Completing the scale on a regular basis can be a great tool and part of the conversation with your doctor, but your condition and how it impacts your daily life isn’t as simple as a score between 0 and 24, says Muppidi.

“Ultimately, the most important question is not just the number on the scale but whether a patient’s daily life is improving,” he says.

• The MG-ADL scale is a short questionnaire that doctors use to understand how myasthenia gravis symptoms affect everyday activities such as speaking, chewing, breathing, and using your arms or legs.
• Scores range from 0 to 24, with higher scores indicating more severe symptoms. Doctors usually repeat the scale over time to track changes, rather than focusing on a single score.
• Some people with MG complete the scale at home, especially when symptoms are changing or after starting a new treatment. Tracking scores periodically can help identify patterns.
• Sharing your scores, along with which symptoms affect your daily life most, can help your doctor better evaluate how well your treatment is working.