You are never alone 
People living with 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.
Here’s a video that brings the MG-ADL scale to life. It may help answer common questions and 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 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.
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. (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 tips
Use the MG-ADL scale to communicate symptoms
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.
Tracking 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. 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.
Using the scale in a way that works for you
The same score can present different symptoms in different people. For example, a score of six might mean trouble swallowing for one person and difficulty lifting arms for another. That’s why, 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.
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REFERENCES :
1. Wolfe GI, et al. Neurology. 1999;52(7):1487-1489.
2. Myasthenia Gravis Fact Sheet. National Institute of Neurological Disorders and Stroke Website. Accessed July 2023. https://www.ninds.nih.gov/health-information/disorders/myasthenia-gravis
3. Myasthenia Gravis. Muscular Dystrophy Association Website. Accessed September 2023. https://www.mda.org/disease/myasthenia-gravis/signs-and-symptoms
4.Albazli K, et al. Front Immunol. 2020;11:917.
5.Vissing J, et al. J Neurol. 2020;267(7):1991-2001.
6.Zhao R, et al. J Transl Med. 2021;19(1):285.