Learn how the MG-ADL scale and other tools may help you improve daily life with MG.
Everyone living with myasthenia gravis (MG) is different—and so are their symptoms! That’s why tracking symptoms consistently, especially when starting a new treatment or experiencing life changes, may help you get a more holistic understanding of MG’s impact on your life. It’s crucial, however, that you’re honest with yourself and your healthcare team when assessing those symptoms—especially since many symptoms vary day to day or even throughout the same day.1
Ideally, people living with MG would want to get to a place where their MG symptoms have minimal impact on their daily lives. Minimal symptom expression (MSE) is defined as a total score of zero or one on the Myasthenia Gravis Activities of Daily Living (MG-ADL) scale (read on to learn more about scoring).2 Achieving MSE is a goal that people living with MG can aspire to pursue as they think about MG management. Learn how you can create and use a personalized MG action plan to set MG management goals, like MSE!
When setting goals and aspiring for minimal or no symptoms, pay attention to the sacrifices you may be making on a daily basis. Remember that neurologists use symptom-tracking tools like the MG-ADL scale to evaluate your MG symptoms, so the more familiar you can become with those tools, the more effectively you may be able to communicate with your healthcare team about how MG is impacting your everyday. Additionally, you can work together to determine what is or isn’t working in your MG management plan to set goals for the future.
The MG-ADL scale provides an assessment of your MG symptoms related to daily activities, focusing on specific muscle groups and physical functions. Answering these questions can reveal how MG affects you every day and help you communicate with your doctor. Here’s one of the questions:
The questions are about daily activities, like breathing, brushing your teeth and getting up out of a chair. The last two questions are about eye-related symptoms that are common in MG.3 To get your result, score where you currently are for each question, and then add all eight scores together. Consider using the MG-ADL scale regularly and sharing your scores with your doctor.
Overall, the lower your MG-ADL score is, the less your daily activities may be impacted. If your score goes down by two MG-ADL points or more, it could be a sign that your treatment plan is making a difference.4 If your MG-ADL score starts to increase, consider talking to your doctor to see if you need adjustments to your treatment plan.4,5 Using the MG-ADL to track symptoms on a regular basis may help you notice changes.
MG symptoms are like the stock market. There are highs and lows, but you need to focus on the trend line. The MG-ADL profile helps doctors distinguish a meaningful deviation from a bad day.
Other symptom-tracking tools
There are different symptom-tracking methods to help you on your MG journey—and using them may help you uncover new information to discuss with your healthcare team! Here are a couple of other tools to consider:
Revised 15-item Myasthenia Gravis Quality of Life scale (MG-QOL15r)6
The MG-QOL15r is a 15-item survey that evaluates how your MG symptoms are affecting your emotional well-being and ability to be independent.
Since living with MG can be challenging, it’s important to recognize what effects it might be having on your independence and overall quality of life. Taking this survey at your doctor’s appointment can help you and your doctor uncover what areas are most important to you. Furthermore, it can help your healthcare team develop an MG management plan targeted at relieving the symptoms that hold you back from things you want to do.
While the MG-ADL assesses specific muscle groups and physical functions that are commonly affected by MG, the EQ-5D-5L scale assesses how those symptoms impact your life. Although the EQ-5D-5L is not specific to MG, it covers five areas that can be affected by the condition—mobility, self-care, usual activities, pain/discomfort and anxiety/depression—for you to rate your experience. At the end, it provides a scale for you to calculate your score, indicating how your health is that day.
Start tracking and work with your doctor
If you haven’t already, try out the tools covered in this overview. Using them on a regular basis may help you communicate with your doctor. Also consider journaling or using an app to document your symptom-tracking efforts and make sharing them with your doctor easier!
However you choose to track symptoms over time, ensure it makes sense to you and discuss your results with your doctor at your next visit.