When you're first diagnosed with myasthenia gravis (MG), it can feel like you're learning a different language. Along with treatment names and unfamiliar medical terms, you're also introduced to a whole new cast of characters in your life – your myasthenia gravis care team.
You are an active and vital member of this team. When you learn how to advocate for yourself, ask questions, and take part in your treatment decisions, everyone benefits.
In a recent WebMD-hosted Reddit AMA, Ryan Donaghy, MD, a neuromuscular medicine physician at Northwestern Medicine in Chicago, answered questions about how best to partner with health care professionals as you manage your disease. He expands on those highlights below.
Track Your Symptoms Between Visits
One of the challenges of MG is that symptoms can come and go. You may feel well with very few symptoms one day and suddenly be much weaker the next.
"Myasthenia is often a moving target," says Donaghy. "There can be a lot of fluctuation in the disease activity."
It helps both you and your doctor when you keep track of your symptoms between appointments. Write down any changes in your strength, vision, speech, swallowing, or energy levels and bring your record to your appointment. This can give your doctor a clearer picture of how you're doing over time.
Donaghy recommends using the MG Activities of Daily Living (MG-ADL) scale, a questionnaire that measures how much MG symptoms are affecting everyday life. The scale asks about common MG symptoms such as double vision, drooping eyelids, problems with speaking or swallowing, breathing difficulties, and weakness in the arms and legs. It also looks at how symptoms affect daily activities like brushing your teeth, combing your hair, or getting out of a chair.
"The key question to ask yourself is, 'How much are these symptoms bothering me?'" says Donaghy. "We want to address the things that are interfering with your everyday life."
Know When to Call Your Doctor
Doctors consider some symptoms more alarming than others. Ask your doctor which symptoms they'd like you to call them about between visits, or even seek emergency care for. Having a plan in place can help you feel more confident if your symptoms change.
Swallowing problems can be especially worrisome, especially if food or liquids are repeatedly getting stuck in your throat, says Donaghy.
Breathing problems can also signal that your MG is getting worse. Sometimes these changes happen gradually, or only at night when you're in bed.
"A lot of people with myasthenia might start developing neuromuscular breathing problems, which tend to manifest when they're laying flat," says Donaghy.
Keep Communicating
Finding the right treatment plan for MG can take trial and error. Some of the newer therapies may start helping within a few weeks, but others can take longer to show results. Doctors also need time to monitor you for side effects and figure out if the treatment you're on is the right fit.
Donaghy says he typically checks in with people within a few months of starting a new treatment to see whether it's helping and whether he needs to make any changes.
"I'm also always monitoring for side effects from medicines, because that can actually help personalize the care more, too."
If you're having side effects you can't tolerate, this check-in gives you an opportunity to talk about alternatives. Even if a medication is working, side effects that interfere with your quality of life may lead your doctor to consider other options. They need your feedback to know what will work best.
Think Beyond Your Neurologist
Your neurologist will be your primary contact for overall medical treatment of your MG, but there are many other specialists who can play an important role in your care.
Physical therapists and occupational therapists can help you regain strength and function as treatment begins to control your disease. A speech-language pathologist can help you manage speech and swallowing problems. A dietitian can help customize a healthy diet if certain foods become harder to eat. Pulmonologists who specialize in neuromuscular conditions may become a critical part of your care if you have breathing problems.
Each member brings a different perspective and skill set. Together, they help address the many ways MG affects your daily life so you can thrive.
"The best results come from a multidisciplinary team approach," Donaghy says.
Ask Questions and State Your Goals
It's true that doctors are experts with years of training and experience to guide you through this process. But MG treatment works best when you actively take part in the conversation, says Donaghy.
"You're vitally important in the treatment course and in treatment planning," he says. "Every step of the way, it's shared decision-making."
If you don't understand something, ask for it to be explained better. If you're worried about side effects, bring that up. If your symptoms are getting in the way of activities you love, make sure your care team knows.
"As doctors, of course we have clinical trial data that support what medications we choose, but if it's not the outcome that you desire, then maybe it's not the perfect treatment for you," says Donaghy.
Unsure? Seek a Second Opinion
You may worry that asking for a second opinion will offend your doctor. Donaghy says that shouldn't stop you from seeking additional expertise.
Most doctors who treat complex neurologic diseases are very open to a second opinion, as long as it's from a reputable source, he says.
Treatment isn't one-size-fits-all, he says. Another specialist may offer a different perspective. In some cases, doctors may even collaborate to help develop the best plan.
Connect With the MG Community
Donaghy encourages becoming part of an advocacy organization such as the Myasthenia Gravis Foundation of America. Groups like this offer educational resources, support programs, and opportunities to connect with others living with MG.
"A lot of these patient-facing groups have a ton of information about the disease and can help guide people early on with additional information and connect them with other people living with MG," says Donaghy. "It's an invaluable resource."
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SOURCE:
Ryan Donaghy, MD, neuromuscular medicine physician, Northwestern Medicine, Chicago.
