Whether you’re newly diagnosed or living with MG for a while, you may learn something you didn’t know.
MG may come with a lot of questions, and getting answers can feel a little daunting. Here, you’ll find answers to the questions Rachel* and Alexis* hear the most often as MG group leaders. They both live with MG and bring their unique perspectives on managing MG and learning as you go.
1. What is myasthenia gravis?
According to both Alexis and Rachel, this is the number-one question they hear from new members in their groups.
“Myasthenia gravis” means serious muscle weakness, which is its main symptom.1-3 It’s an autoimmune disease that affects the neuromuscular junction, where nerves and muscles meet and communicate.3 When you have MG, your immune system attacks your muscles, which prevents them from receiving messages properly from your nerves.3,4 As a result, the muscles don’t contract as much as they are supposed to.4
“A lot of people ask me, ‘Is it contagious?" said Rachel. “They’re worried it’s something their families can catch from them.” MG is not contagious, and although it sometimes runs in families, it’s not fully understood why some people get it while others don’t.5
2. How do I know what treatments are available for MG?
Both Rachel and Alexis agree that MG groups can be a great starting point for learning about the treatments that are out there for MG. In a group, you may have opportunities to talk to other people living with MG about their experiences with different treatments. Of course, it’s important to understand that everyone may not respond to treatments the same way.
It's important to talk to your doctor about your symptoms, goals for your life with MG, and available treatment options. Another helpful resource is this article on MG treatments, for an overview of the treatment landscape. Your doctor will work with you to assess how you are doing on your current treatment and any necessary next steps.
3. How do I find a neurologist to help manage my MG?
There are lots of reasons you might be looking for a neurologist. You may be newly diagnosed, relocating to a new area or simply looking for a switch. No matter the reason, finding a neurologist you feel you can partner with is an important part of MG management.
Rachel pointed out that an MG group can be a great resource for doctor recommendations. “You can learn firsthand who other people are seeing, what is and isn’t working for them. What’s not working for one person isn’t necessarily a bad thing—it is just a point for a new patient to be aware of.”
If you’re not quite sure what qualities you’re looking for in a healthcare provider, this quiz may offer some inspiration.
4. What are the financial implications of MG care?
Costs for MG care can vary widely and depend on a lot of factors—for example, your insurance coverage or the specific tests and treatments you might need. There may be ways to lower your costs, if you’re eligible.
If you’re starting on a treatment that’s new to you, Alexis recommends asking your doctor if any savings options are available—but, he said, don’t stop there. Visiting the product website, or your local pharmacist may be another avenue for learning about savings options for some treatments.
Of course, there are other financial considerations that go beyond healthcare and treatment. Talking to a financial professional may be helpful for understanding your financial needs and planning ahead.
5. What strategies might help me manage my symptoms?
MG symptoms can vary from person to person. That’s why Alexis believes it’s so important to understand how MG affects you individually. “Know your triggers,” he said. “When I have a symptom exacerbation, the first thing I do is look at my environment. What was the temperature? Had I just eaten? Was I in a stressful situation?”
And stress, he pointed out, doesn’t have to come from something negative. Even something fun, like going to a wedding, can mean a lot of planning, a packed schedule and maybe even some travel. Those “good” stressors may still have an effect on your body and your MG.
To help stay on top of symptoms and triggers, Rachel finds tracking valuable. “I make sure I capture it whenever I have a bad day,” she said. “Sometimes I just email myself or text myself—it’s not a formal book and pen. I encourage people to use whatever tools they find helpful.”
Not sure where to start? Read about the ways that neurologists measure MG symptoms and download a few worksheets to help you start using these strategies yourself. For instance, the Myasthenia Gravis Activities of Daily Living (MG-ADL) profile is a straightforward scoring tool that may help you spot trends in your symptoms. By using a score-based tool like the MG-ADL, you may get a sense of how you’re progressing toward your goals—and where there may be room for improvement.
6. How do I explain MG to other people?
MG can feel complicated to explain, and the people in your life might not “get it” right away. If you’ve ever wished your friends and family had a better understanding of your life with MG, this guide may help you start the conversation. Romantic partnerships may also benefit from periodic check-ins about MG and what it means to the relationship.
Rachel pointed out that, depending on the person, they still might not fully understand. But she feels the conversation is worth having. “Even if I can’t explain it well to them, they might see MG depicted in a commercial or TV show and come back with a heightened awareness.”
Talking about MG at work may be a different matter. Once you and your doctor have discussed any concerns you have about performing your job duties, it’s up to you whether you want to disclose your diagnosis to your employer.
7. How do I explain MG to my kids?
The idea of explaining a complex disease like MG to children may seem difficult. But with age-appropriate conversations, you may be surprised at how quickly they learn.
If I’m switching treatments, it’s not just my doctor and my wife who know about it. I tell my kids, too.
At seven years old, Rachel’s daughter is still learning about MG as she goes. “We started talking about myasthenia gravis when she was five,” said Rachel. She described how proud her daughter was of being able to say the word myasthenia and how her daughter’s kid-sized MG Awareness Month T-shirt became a learning experience.
“I’ll use the word myasthenia sometimes when I’m explaining why Mom has to stop playing and go sit down,” said Rachel. “I’ll say, ‘Remember myasthenia?’ And she’ll say, ‘Oh, my shirt!’” Rachel explained that it’s been a helpful tool for guiding the conversation in an age-appropriate way.
Alexis, whose three kids are between the ages of 10 and 22, approaches this issue with ongoing conversations and transparency. “If I’m switching treatments,” he said, “it’s not just my doctor and my wife who know about it. I tell my kids, too.” They’ve even been taught how to help if they see him experiencing symptoms suddenly.
Bookmark this discussion guide for a few more tips from clinical health psychologist and parenting columnist Emily Edlynn, PhD.
8. What are the benefits of joining an MG group?
For Rachel, MG groups are an important resource for living with MG. “Finding others who have been through similar situations is just invaluable,” she said, adding that it was another support group member who helped her deal with a severe bout of double vision. “Had it not been for the fabulous soul who told me about putting tape on my glasses over one eye, I would have lost my mind!” Some of the best real-world tips and tricks, she’s found, come from others in the MG community, who have unique perspectives and practical experience.
If you’re interested in joining a group, you can look for one in your area that meets in person. But don’t stop there—many groups now meet virtually or have virtual options for attending live meetings. Ask your doctor if they know of any groups that might be a good fit or explore these advocacy organizations for recommendations.
9. How do I do more of the things I care about with MG?
MG may feel like it gets in the way of everyday activities, big and small. Both Rachel and Alexis reported that people newly diagnosed with MG often wonder about lifestyle choices like diet and exercise. If you’re looking for kitchen inspiration, check out this collection of MG-friendly recipes or take this quiz to get a recipe that may be a match for your mood and energy level.
The downloadable Energy Savers eBook has a wealth of “life hacks” for managing symptoms and practicing self-care. And if you’re looking for ways to add a little more physical activity to your routine, this MG-friendly exercise video may be a good place to start.
Don’t hesitate to include these types of goals in your conversations with your care team. Discussing your symptoms is important, but you can also let your doctor know how your symptoms may be stopping you from doing more of the things you love. These details may give your doctor a better sense of what’s going on and whether to consider changing your treatment plan. This article and downloadable discussion guide may help you start the conversation.
10. How can I feel more prepared to deal with a crisis?
It’s estimated that 15% to 20% of people living with MG experience at least one myasthenic crisis in their lives.6 The Myasthenia Gravis Foundation of America (MGFA) defines myasthenic crisis as a complication of MG characterized by worsening of muscle weakness often resulting in respiratory failure. Because of the severe nature of myasthenic crisis, it’s important to be prepared and know how to recognize one—read a few important tips here.
Alexis also finds it invaluable to prepare the people around him so they know what to do before the need ever arises. For instance, he realized early on that the generic drug names printed on his prescriptions didn’t always match up with the drug’s more commonly used brand name. And these complicated drug names are not easy to clarify when he’s experiencing symptoms that make it hard to speak. He’s found it helpful to ensure his caregivers know exactly which prescriptions are which in the medicine cabinet.
No matter how long you’ve been living with MG, new questions may arise as your goals shift and you navigate new challenges. Be sure to reach out to your care team with questions about your MG treatment and take full advantage of the resources available in your community for answers and support along the way.