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 someone is doing and help make the connection between symptoms and their effect on one’s daily activities and goals.
Where to begin with MG symptom tracking?
The Myasthenia Gravis Activities of Daily Living (MG-ADL) scale is a tool that helps identify the impact MG has on a person’s daily life by providing an assessment of the severity of their symptoms.1 Also, using the scale may lead to more effective discussions with their 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, which are 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, as you may know, ocular symptoms are common in MG.1,2
Each item is measured on a scale of 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, assess the result for each question and then add all eight scores together. The total score can range from zero to 24 points—in general, the lower the score, the less one’s daily activities may be impacted.1 Everyone's score may be different, 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 someone has to drive somewhere, and the three is in the ocular category, that would greatly affect their ability to operate their vehicle safely.
MG tip: The MG-ADL scale can help people translate their symptoms into a number that may help them explain how they’re feeling to others. 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 the video What’s Going on with Me and MG?).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 (or your loved one’s) 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 is 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 a healthcare team is important when it comes to finding a goal that works for you such as lowering your score. Take stretching, for example; some days you can reach your knees or toes and 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 a 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 (or your loved one) may be able to do what you want in your everyday life and the closer you may be to reaching your personal goals.