It may be difficult to explain to your healthcare team how your MG symptoms are affecting your lifestyle, but it's an important step in finding the best management plan for you. Discussing your symptoms, goals and how MG impacts your daily activities may help your healthcare team understand what’s going on in your life and if they should consider making changes to your myasthenia gravis management plan. Consider the tips in this article and the downloadable discussion guide to help organize your thoughts and guide a successful conversation with your doctor. You are your own best advocate, and when your doctor understands you, it may be easier for them to prioritize the things that matter most to you.

Step 1: Write down your symptoms to keep them top of mind and prepare key points

Since time with your doctor can be quick, you may find it helpful to take a few minutes to prepare for your next appointment by writing down your symptoms to help you get the most out of your visit. You can start by thinking about the top three symptoms that are most bothersome to you and most affect your daily life. Have your symptoms limited your ability to complete your favorite hobby or reduced social interactions? According to Dr. Michael Nicolle*, “Knowing the top three symptoms helps me differentiate what’s important to the patient versus what’s important to me; it also helps me know whether what they have is even MG. We spend quite a bit of time trying to sort symptoms of MG from symptoms that are not MG—or symptoms of side effects from medications.”

Ultimately, having your symptoms written down may help start the conversation with your doctor and maximize the time you have with them during your visit.

Step 2: Think about what matters most to you

Think about how your symptoms interfere with your ability to complete day-to-day tasks and activities and how this impacts your ability to work toward your goals. Do you have plans that you want to make with regards to working or seeing your friends and family? Share what you’ve been looking forward to doing and try being as specific as possible. The extra details may help your doctor understand what’s going on and if they should consider changing plans.

For example, instead of saying “I’m frequently tired,” you might try, “I’m unable to walk my dog because of my muscle fatigue and would like to get back into that routine.” Or, “My muscle weakness prevents me from walking and going to the grocery store to buy butter and I’d love to start baking again.” Using more specifics like, “My double vision prevents me from driving, and I want the independence to see my family again,” may give your doctor a better picture of what you’re experiencing.

Your doctor wants to hear how you’re doing and what your priorities are. Including examples may change the picture in terms of what your doctor sees. When speaking about his patients with MG, Dr. Nicolle said he likes to know “how much of their improvement is true improvement, in terms of resolution of symptoms versus them just adapting and being able to cope with the limitations they had before. It’s helpful for me to know whether they truly are better or whether they are just coping better.”

Additionally, readdressing your expectations and needs is important in being your own advocate and ensuring that you are in the driver’s seat when it comes to your goals. Having an open dialogue with your doctor about symptoms and how they affect your day-to-day living is at the heart of patient-centered care. It takes teamwork to create your unique management plan.

Thinking about your expectations and adding in these specifics may help your doctor better tailor your management plan toward meeting your personal goals. Remember that the better they understand what you’re going through, the better they’ll be able to support you.

Step 3: Prepare for your next discussion with your doctor

If you’re newly diagnosed with MG, living with MG that isn’t being managed well or not satisfied with the progress of your current treatment, you may have many questions running through your mind about what to do next. Part of preparing for your next visit with your doctor is thinking about and writing down the questions that are important to you about living with MG and what you can expect moving forward.

Some questions to consider asking your doctor include:

• Is there anything else you can tell me about my current symptoms and what other symptoms are possible?
• Who else will be part of my healthcare team?
• What types of treatments are available? Are there any therapies I haven’t tried yet?
• What can I realistically expect in terms of improvement of my symptoms with treatment?
• What side effects can I expect with treatment?
• Are there resources for me, such as support groups, information I can share with my loved ones and guidance on navigating health insurance for certain treatments?

Download and fill out the doctor discussion guide below or take pictures of it on your phone and bring it to your next appointment to help you have a productive conversation with your doctor.