People living with myasthenia gravis (MG) may not recognize how much their symptoms are affecting their daily life.
Symptom tracking is a great way to better understand how you’re doing and help make the connection between symptoms and their effect on your daily activities and goals. If you’re an MG supporter, consider partnering with your loved one on symptom tracking to help them on their journey.
Here’s a video that brings the MG-ADL scale to life. It may help to answer some common questions, which may lead to more productive conversations with your healthcare team.
Where to begin with MG symptom tracking?
The Myasthenia Gravis Activities of Daily Living (MG-ADL) scale is a tool that helps you identify MG’s impact on your daily life by assessing the severity of your symptoms.1 Also, using the scale may lead to more effective discussions with your healthcare team.
Symptom tracking is very helpful, especially when you are going to doctor’s appointments and can have something right there to hand them.
How to use the MG-ADL scale
The MG-ADL scale is one of a few ways to track MG symptoms and includes eight symptoms that are commonly associated with MG. It’s made up of eight questions about daily activities like breathing, brushing teeth and getting up out of a chair. The last two questions are eye-related (eyelid droop and double vision) because ocular symptoms are common in MG.1,2
The scale measures each area from zero to three, with a score of zero representing normal function and a score of three representing the greatest severity of symptoms.1
To find the MG-ADL symptom score total, add all eight scores together. The total score can range from zero to 24 points—in general, the lower the score, the less potential impact on your daily activities.1 Everyone’s score may be different because it all depends on how it feels for the individual. For example, a total score of three out of 24 on the scale is on the lower side—but if you need to drive somewhere and the three is in the ocular category, that would greatly affect your ability to operate your vehicle safely.
MG tip: The MG-ADL scale can help you translate your symptoms into a number that may help explain how you’re feeling. For example, if your MG-ADL total score is a one, sharing that number with your family may help them better understand that your MG symptoms are not as bothersome.
Consistency is key
MG is unique because everyone’s experiences and symptoms are different. Symptoms may vary from person to person, day to day and even hour to hour (you can learn more about MG in this article).2,3 Because of fluctuation, developing a routine around tracking symptoms regularly may be a good idea.
Consistency with tracking is essential to better understand symptoms, their impact and how they can change over time. It may also help give your healthcare team an accurate picture and help make the connection between symptoms and their impact on daily abilities.
When I see an MG-ADL score, I can get a snapshot of where you are, but more importantly, I can track it every time you come in.
Using the scale in a way that works for you
- MG-ADL score totals present as different symptoms for different people. For example, two people could have a score of six, but one person may have trouble swallowing and chewing, while the other may find lifting their arms or getting out of a chair to be difficult
- It’s important to speak to your healthcare team regardless of your number on the MG-ADL scale
Aiming for minimal symptoms
A higher score represents a greater severity of symptoms that may get in the way of daily abilities, whereas a lower score may mean having fewer symptoms. A total score of zero or one on the MG-ADL scale is considered minimal symptom expression (MSE).4
It indicates a person living with MG is symptom free or almost symptom free when it comes to activities of daily living.5,6 Working with your healthcare team is important when it comes to finding a goal that works for you, such as lowering your score. One goal might be stretching. Some days you can reach your knees or toes. Some days maybe you can’t. Sometimes it’s simply an off day. That’s why consistently tracking your symptoms is so important.
After regularly tracking symptoms and sharing your MG-ADL score with your healthcare team, a next step could be asking how a different treatment plan may help manage your symptoms. The lower the score, the more you may be able to do what you want in your everyday life and the closer you may be to reaching your personal goals.
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