How to Track Myasthenia Gravis Symptoms with MG-ADL

Because myasthenia gravis (MG) symptoms fluctuate throughout the day, the best way to track them is by recording how you feel at your absolute worst, rather than just how you appear during a brief morning clinic visit. Experts recommend using a simple 8-question survey called the MG-ADL (Myasthenia Gravis Activities of Daily Living) to measure how the disease impacts your life over the past week ^[1][2]. Supplementing this weekly score with a daily journal, smartphone photos, and voice recordings provides your care team with a much more accurate picture of your disease than a standard doctor’s exam ^[3][4].

Understanding the MG-ADL Score

The MG-ADL (Myasthenia Gravis Activities of Daily Living) is a validated, 8-item questionnaire that measures how your symptoms affect everyday tasks ^[1][5]. Instead of relying on a doctor’s snapshot examination, this patient-reported tool asks you to rate your own functional limitations over the past 7 days ^[2][1]. You can easily find printable versions of the MG-ADL through major advocacy organizations like the Myasthenia Gravis Foundation of America (MGFA), or ask your neurologist for a copy.

The tool assesses tasks across several categories, assigning a score from 0 (normal) to 3 (severe) for each item, with a maximum possible total score of 24. For example, for chewing, a 0 means normal, a 1 means slight difficulty, and a 3 means you rely on a feeding tube.

• Bulbar symptoms (affecting the mouth and throat): Talking, chewing, and swallowing.
• Respiratory symptoms: Breathing limitations.
• Gross motor tasks: Getting up from a chair, brushing teeth, or combing hair.
• Ocular symptoms (affecting the eyes): Double vision and eyelid drooping.

A lower total score indicates less impact on your daily life. Clinical guidelines recommend tracking this score consistently to help doctors determine if your current medication is working ^[6][1]. Aiming for an MG-ADL score of 0 or 1—known as Minimal Symptom Expression (MSE)—is now recognized as an excellent and practical treatment goal ^[7][8].

Tracking Your “Worst” Moments (Diurnal Variation)

Myasthenia gravis is famous for diurnal variation, meaning symptoms change depending on the time of day and your activity level. You might wake up feeling strong, but experience severe muscle fatigue by the afternoon or after physical exertion.

Because of this fluctuation, snapshot assessments at the doctor’s office can be misleading ^[9][10]. If your doctor only sees you on a “good” morning, they may mistakenly believe your MG is perfectly controlled. While the formal MG-ADL asks you to reflect on the past week, you should also actively document the extremes of your daily fluctuations. Capturing your highest level of limitation ensures that your care team understands the full extent of your struggles and can adjust therapies accordingly ^[10][11].

Practical Tips for Home Tracking

Constantly focusing on and recording your “worst” moments can feel emotionally draining, but doing so provides vital evidence to get you the care you need. You do not need to take the 8-question MG-ADL every single day—doing it once a week is usually sufficient. To capture your daily variations efficiently:

• Take Photos and Videos: Ptosis (drooping of the upper eyelid) and ocular muscle fatigue are easy to capture on camera. Take a photo or record a short video on your smartphone when your eyelid drooping or double vision is at its worst. This provides objective, quantitative data for your doctor ^[3][9].
• Record Your Voice: If you experience voice changes or slurring (bulbar fatigue) after long conversations or at the end of the day, a quick voice memo on your phone serves as invaluable evidence.
• Keep a Symptom and Medication Journal: Log the exact times you take your medication alongside when your symptoms spike. Because MG symptoms often worsen right before the next dose (a “wearing off” effect), this helps your neurologist adjust your dosage schedule.
• Summarize for the Doctor: Doctors are busy, so presentation matters. Keep your tracking organized. Create a specific album on your phone for your MG photos and videos, and bring a concise list of your weekly MG-ADL scores to your appointment.
• Be Consistent: Regular follow-up and active tracking on your part are strongly associated with better quality of life and improved symptom management ^[12]. Self-reported MG-ADL scores have a high level of agreement with physician evaluations, meaning your input is highly trusted and vital for your care ^[13].