Tracking the fluctuating daily symptoms of myasthenia gravis (MG) might sound like one task too many — but the knowledge it provides is often worth the effort. Keeping an accurate and detailed description of your symptoms can help you understand what triggers them and how well your treatment is working. Here are a few tips on how to make the most of your symptom journal for MG.
The importance of keeping a symptom diary in myasthenia gravis
Living with MG is a personal journey that can vary from person to person. By tracking your symptoms, you will learn to live better with your disease by understanding what triggers your symptoms and the lifestyle changes and treatments that will best help you manage MG.
Logging your symptoms and their severity can help you recognize patterns that you wouldn’t otherwise. It can also help you identify changes that might be hard to notice in day-to-day life — whether it’s symptoms slowly improving thanks to a new treatment, or the disease progressing over time. This information is important for you, and for your healthcare team: it can provide your doctor with key insights into your disease, how and if it is progressing and inform decisions around your care.
What information should be recorded in a symptom journal?
A symptom journal is most valuable when it includes regular entries with detailed accounts of symptoms and how and when they have occurred. Daily or weekly updates are usually recommended.
You may wish to track symptoms using the myasthenia gravis activities of daily living (MG-ADL) scale, a widely used tool to assess MG symptoms and disease burden. This questionnaire rates MG’s impact on eight activities of daily life:
- Talking.
- Chewing.
- Swallowing.
- Breathing.
- Impairment of ability to brush teeth or comb hair.
- Impairment of ability to arise from a chair.
- Double vision.
- Eyelid droop.
The MG-ADL scale can help you make connections between symptoms and their impact on daily living, and track your disease burden over time.
You might instead wish to track symptoms are they arise. Recording the following information is generally a good place to start:
- Date/time.
- Symptom name/description.
- Unexpected or unfamiliar details of the symptom.
- Severity from 1-10.
- How long the symptom lasted.
- Potential triggers you’ve identified.
Read more about signs and symptoms of MG
Best practices for keeping a symptom tracker
A symptom diary should be honest and subjective. Here are some tips on how to get the greatest benefit out of documenting your symptoms:
- Be brief but consistent.
- Don’t leave anything out.
- Ask a loved one for their observations.
- Keep the format simple and easily accessible.
You might need to test different approaches to keeping your symptom journal to find one that sticks. Options include:
- A simple notebook where you freely write all symptom-associated information.
- Printed templates with pre-defined headings that you fill and collate in a binder. Many templates for the MG-ADL scale are available online.
- A spreadsheet you update on your computer.
- A dedicated app or the notes app on your smartphone.
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