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Being diagnosed with myasthenia gravis (MG), a rare autoimmune disorder that causes extreme fatigue and muscle weakness, can feel overwhelming and leave you wondering where to begin. These feelings are completely normal and expected. Remember that today’s medical community understands your journey and is equipped to help you reclaim your daily life.
In time, as you learn more about your condition and get the proper treatment, you may start to feel more confident navigating day-to-day life with myasthenia gravis. The keys are following your treatment plan, learning to recognize personal triggers, tracking your symptoms, and turning daily uncertainty into a manageable routine.
Learning these basic principles can help you feel more confident and prepared to manage your condition. Here’s what you need to know about myasthenia gravis, including where to begin in building your understanding of this condition.
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Everyone who’s diagnosed with myasthenia gravis will experience this condition differently. This means symptoms and triggers will be different for everyone. That’s why health experts often refer to this condition as a “snowflake disease.” It also means your treatment and daily strategy will be uniquely tailored to match your body’s personal fingerprint.
Myasthenia gravis can affect any muscle that you have voluntary control over. This includes your eye movements, chewing, coughing, swallowing, and facial expressions. Even your breathing and limbs can be affected — and your symptoms can change or come and go.
When you were first diagnosed with myasthenia gravis, you may have had drooping eyelids or double vision — some of the more common symptoms of this autoimmune condition. Or maybe you experienced weakness in your arms or legs or had trouble breathing. Over time, though, this can change, and the weakness shifts into other muscle groups.
Sometimes when you have myasthenia gravis, you can experience a flare. This means your symptoms worsen or become more frequent or severe, requiring a little extra rest or medical adjustment.
If you have a flare-up, contact your healthcare provider and neurology team. They can help you manage your symptoms before myasthenia gravis impacts your breathing and becomes a crisis.
You may have a crisis, or what’s sometimes called a myasthenic crisis. This is a serious medical emergency where respiratory muscles weaken to the point that you may need immediate emergency medical care.
These crises can be triggered by stress, infections, recent surgery, getting overheated, or a reaction to a medication.
Here are some other potential myasthenia gravis triggers:
Of course, MG triggers are different for everyone. Learning to recognize your personal triggers and reducing the chances that you’ll have a flare are important when living with your condition. This is especially true since up to 20 percent of people with myasthenia gravis will experience at least one crisis.
Because myasthenia gravis symptoms can come and go, it’s important to be aware of how your symptoms are changing.
For some people, symptoms will disappear for a short time or go away completely. For others, they linger for years.
Myasthenia gravis symptoms can also change throughout the month, week, or even day. For many people, symptoms improve with rest. But you still need to keep track of what you’re experiencing in order to accurately understand how your body responds to this condition.
Your healthcare provider will also track your symptoms using the MG Activities of Daily Living scale (MG-ADL). But you can use this scale at home as well to keep a record of your symptoms. Just write down what you’re experiencing and rate its severity on a scale of 0 to 3.
Record Medications and Timing You should also record what time of day you notice your symptoms and how long they last. Make note of which activities you were participating in and list any known triggers.
And record what time of day you feel your best or the strongest. This helps your care team map out a precise dosing schedule that keeps pace with your day.
As for your medications, write down what you’re taking, the time that you take it, and how much you take. You should also note how you feel when the medicine kicks in, as well as document any side effects you experience. This information can help your doctor fine-tune your regimen with absolute precision.
Consider Digital Tracking If you don’t like writing things down, there’s also the MyMG Mobile app provided by the Myasthenia Gravis Foundation of America that you can download and use to track your symptoms. There’s even a prompt on the home screen where you log how you’re feeling.
Tracking symptoms helps you record and communicate the status of your condition. And when shared with your healthcare team, it can help ensure you’re getting the treatment you need and that appropriate adjustments to medications are made.
For most people, myasthenia gravis is a chronic condition, or a disease that lasts one year or longer and requires ongoing medical care. While there’s no cure for myasthenia gravis, there are several treatments that can effectively manage your symptoms.
That said, some people with myasthenia gravis do experience improved muscle strength with treatment. And some even experience remission. In fact, as many as 40 percent of people with myasthenia gravis will experience complete stable remission where disease activity quiets down significantly.
When treating myasthenia gravis, one of the most used drugs is pyridostigmine (Mestinon). This drug blocks the enzyme acetylcholinesterase. This, in turn, makes it easier for your nerves to communicate with your muscles.
Steroids such as prednisone are also sometimes used, especially if your myasthenia gravis symptoms are severe. In fact, corticosteroids or other immunosuppressants are often the next line of treatment after acetylcholinesterase inhibitors and can be very effective in improving symptoms by calming down the overactive immune response at its root.
Because not every treatment option will be appropriate for every person with myasthenia gravis, there are a number of other prescription medications and surgical procedures that may be used to treat myasthenia gravis. These include:
The best way to manage myasthenia gravis is to continue learning about the condition and studying how it affects your body.
Gaining a deeper understanding of its impact on you, including which symptoms you experience, is key to ensuring you get the right treatment when you need it.
It’s also important to stick to your treatment plan and maintain open and honest communication with your healthcare team. By letting them know what you’re experiencing, including issues with medications, you can ensure your treatment is finely calibrated for what you need.
Also let other healthcare providers know about your condition. This way, they can collaborate with your myasthenia gravis doctor and avoid prescribing treatments or drugs that could make your condition worse. Even your dentist should know that you have myasthenia gravis, especially before dental work.
Finally, remember that myasthenia gravis is a challenging condition, especially in the beginning. Take steps to lighten your load, reduce stress, and care for yourself.
It’s also important to build a support network. Consider joining a support group so you can get to know others living with myasthenia gravis. Local groups, social networks like MGteam, and doctor referrals are great ways to build relationships.
Being in community with others can improve your sense of well-being and quality of life. It also reminds you that you’re not alone. There are many other people out there learning to navigate life with myasthenia gravis, and together you can support one another and get stronger.
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