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Initiate the conversation with doctors
Myasthenia gravis (MG) can be a complicated illness to diagnose and manage (1). Did it take a while for you to get diagnosed?
Did your diagnosis involve seeing multiple doctors? These experiences are common.
MG is a rare disease, and symptoms often vary from person to person and even day to day, making it difficult to detect and diagnose.(1,2) And while your MG diagnosis may be validating, you may also learn that managing an unpredictable chronic illness can present a unique set of challenges.
Effective long-term management of MG requires a strong partnership between you and your healthcare team. Here are some tips to help you get started:
Try to find a doctor familiar with MG
If you’re moving and need to find a new doctor familiar with MG in the area, consider asking your current doctor for a referral. You can also look up the neurology department at a hospital in the new location to find a neuromuscular specialist. Also check with your insurance company when you change doctors, as sometimes coverage may change.
Share your symptoms with your doctor in detail
Since MG symptoms can be difficult to measure, change over time, and vary daily, it’s crucial to provide your doctor with a detailed description of your symptoms. Your doctor relies on your accounts to understand the severity and variability of your condition. Keep a symptom diary - and use the MG-ADL scale - to track your experiences, noting any fluctuations and potential triggers.
By providing detailed information about your symptoms, their onset, duration and any associated factors, you enable your doctor to gain a full understanding of your health.
Prepare for effective communication
By preparing in advance and clearly articulating your symptoms, concerns and questions, you lay the foundation for a meaningful dialogue with your doctor. This clear communication ensures that your doctor fully understands your needs and is able to provide tailored recommendations and treatment plans.
Take an active role in your healthcare
Engage actively in discussions with your doctor, ask questions, and seek clarification on medical issues. This improves your understanding of your condition and promotes a sense of control over your healthcare decisions, enabling you to make informed choices.
Focus on preventive care
By discussing risk factors, screening recommendations and lifestyle changes with your doctor, you can proactively reduce health risks and promote long-term well-being. Regular check-ups also facilitate early detection of potential health problems, allowing for timely intervention if necessary.
How to effectively communicate Myasthenia Gravis symptoms to your doctor
- Write down your symptoms in a concise, organized way so you can share them with your doctor to review. Some things to consider are: How often do symptoms occur? How severe are they? Are they better on one day and worse the next? How long do symptoms last? Do they go away for a time and then recur?
- Track and share your symptoms over time. This lets both you and your doctor see variations and patterns in what you’re experiencing. You can keep a daily log or diary manually or use apps on your phone to track and share your symptoms.
- Try to give your doctor a clear picture of your symptoms since your last appointment. Even if you are feeling great at the time you see your doctor, you should still report symptoms you may have had a week or a month ago.
- Describe your symptoms in detail. The way in which you describe your symptoms and how they affect your daily activities can also help your doctor get a better idea of what you are experiencing. Be specific about the impact on your daily life, such as difficulties in performing routine tasks, changes in your energy levels, or any new challenges you've encountered. Providing a thorough and detailed account will enable your doctor to tailor the most effective treatment plan for you.
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REFERENCES :
1. Gilhus NE. N Engl J Med. 2016;375(26):2570-2581.
2. Phillips LH. Ann N Y Acad Sci. 2003;998:407-412.