Being prepared for changes in your MG can make a big difference.
By now, your myasthenia gravis (MG) diagnosis may feel like a distant memory. Maybe your treatment plan is working for you and you’re feeling okay, or maybe you could be feeling better.
While it can be hard to think about the future when dealing with the daily symptoms of MG, it’s important to stay empowered. A good way to prepare for potential changes is by staying informed. You’ll be surprised at how much new information on MG is out there. It may help you determine a path to improving your quality of life.
I set up Google Alerts about MG, read newsletters, listen to podcasts, watch seminars … As a mature myasthenic, staying current is how I stay empowered.Rachel Higgins
Diagnosed in 2008
Know Your MG-ADL Score
One tool that your care team may use to monitor how you are doing is the Myasthenia Gravis Activities of Daily Living (MG-ADL). The profile is a simple, eight-question survey that measures the intensity of MG symptoms across your entire body and the impact of symptoms on daily activities. Total scores can range from 0 to 24, and the lower the number, the better.1
Knowing your MG-ADL score may help you understand where you are with your disease. Regularly discussing your MG-ADL scores with your care team can also help you better communicate your symptoms, identify which symptoms you experience most consistently over time and help you set goals for the future.
Know Your MG Serotype
There are a few different types of MG (also called serotypes), and your treatment plan will be impacted by your type of MG.2 Your serotype is determined by the type of antibodies found in your blood that are attacking your muscles.2
If you don’t know your serotype, ask your care team so you can be informed about what types of treatments are available to you.
Know How MG Works and What’s Being Researched by Scientists
Just like your MG may change over time, scientists’ understanding of how the disease works has changed a lot, especially within the past few years. There is a lot of research being done on MG, so it’s helpful to be familiar with the basics of how MG works to help you interpret new information.
As you may already know, MG is caused by a breakdown in communication between nerves and muscles. When your immune system mistakenly attacks your muscles, your muscles have trouble receiving signals properly.2,6
To find out more about how MG works, read “What Is Myasthenia Gravis, and Why Does It Happen?”
Know Your Crisis Plan
Tracking your MG-ADL score, knowing your serotype and understanding how MG works will help you and your care team make informed decisions about your treatment plan. One way to be more prepared for dealing with your MG is to have a plan for how to avoid a crisis if you have a flare.
A flare is a sudden worsening of symptoms, which may include difficulty swallowing or breathing. Flares can occur for a number of reasons, including stress, infection and not taking high enough doses of MG medications.7 If a flare is not controlled, it can progress to a crisis, which would require a trip to the hospital.7 That’s why it’s best to communicate and check in regularly with your care team about how you are doing.
Everyone with MG should do their best to avoid a crisis, and there are things to avoid (such as conflicting medicines). But you should also have a crisis plan, just in case. This crisis plan should include your family, caregivers and friends. For more information about creating a crisis plan, check out “Crisis 411: What You Need to Know About Myasthenic Crisis.”
Maybe you only knew a couple of these things, or maybe you didn’t know any of them. That’s okay! With MG, knowledge is power, and it could help you and your care team develop your treatment plan.
Ready? Here are some tips to consider:
- Download the MG-Activities of Daily Life profile and discuss how to use it with your care team
- Find out what your MG serotype is
- Get to know how MG works in the body, and do some research about what scientists have recently learned about MG
- Work with your care team to create a crisis plan, and make sure your family, caregivers and friends know the plan as well
Share What You Know with the MG United Community
While living with MG for many years can be exhausting, it is also undeniably educational. You know a lot more than most about living with MG. And the strategies you’ve developed over time to manage your life better are extremely valuable. We hope you’ll take a moment to share your hard-earned wisdom to help others make progress in their MG journey.
- Wolfe GI, et al. Neurology. 1999;52(7).
- Gilhus NE. N Engl J Med. 2016;375(26):2570-2581.
- Gilhus NE, et al. Nat Rev Neurol. 2016;12(5):259-268.
- Behin A, Le Panse R. J Neuromuscul Dis. 2018;5(3):265-277.
- Zisimopoulou P, et al. J Autoimmun. 2014;52:139-145.
- Ruff RL, et al. J Neuroimmunol. 2008;201-202:13-20.
- Gummi RR, et al. Muscle Nerve. 2019;60(6):693-699.
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