Myasthenia gravis (MG) can affect your whole body. But symptoms are different for everyone. Keep an eye on how you feel throughout the day. That’ll help point your doctor in the right direction when it comes to treatment. Here are some tips to get you started.
Track Your Symptoms
You may feel stronger at certain parts of the day. For some, that’s first thing in the morning or after your medication kicks in. You may also notice that your symptoms come and go. They may happen the most during your first 1 to 3 years with MG.
In general, you may get weakness in some or all the muscles you control. Keep your doctor updated about the following:
Eye problems. Blurry vision or droopy eyelids can make it hard to drive, read books, or look at a computer screen.
Mouth, face, or throat issues. You may not speak clearly when you talk for a while. Certain foods may be hard to chew or swallow. It may be hard to smile.
Weak arms and legs. You may not be able to lift your laundry basket, grip a brush, or walk very far without needing to rest.
Shortness of breath. Get medical help right away if you have trouble breathing. This can be a life-threatening emergency. You may need extra help to keep your airways open.
Tell your doctor which symptoms bother you most. Let them know if certain problems happen more often or get more serious. They may need to change your treatment to help ward off a flare.
Log Your Myasthenia Gravis Medications
You’ve got lots of treatment choices when it comes to MG. But you’ll need some patience. It can take some trial and error to figure out which one works best for you.
Your doctor may give you fast-acting drugs. They’re designed to help your muscles work better right away. But it may take a few weeks or months for some treatments to boost your strength.
These tips can help you and your doctor zero in on the right approach:
- Write down when you start a new drug or adjust doses
- Keep track of any good or bad symptom changes
- Tell your doctor about any unwanted side effects
You can also ask your doctor some questions about your medication, such as:
- How do I know if my treatment is working?
- How long should it take to see progress?
- What can you do to ease my side effects?
- What are the next steps if this treatment doesn’t work?
Know Your Triggers
Once you have a good idea how MG affects your body, write down what you’re doing when your symptoms come on. That’ll help you spot everyday tasks that sap your strength.
Muscle weakness can happen fast. Common triggers include:
Too much effort. The main feature of MG is that your muscles get weaker the more you use them. Rest when you start to feel weak or tired. That includes your eyes. Work with your doctor to come up with an exercise plan that won’t wipe you out.
Mental stress. Depression, anxiety, and other kinds of emotional distress may trigger a flare. Tell your doctor if you’re having mental health challenges. They can refer you to a mental health professional who’ll help you adjust to life with MG.
Medication or supplements. Always check with your doctor before you start a new drug (over-the-counter or prescription), vitamin, or supplement. They’ll let you know what’s safe. Find more information in the “Cautionary Drugs” section on the website of the Myasthenia Gravis Foundation of America.
Not enough sleep. Adults need about 7 to 9 hours of shuteye a night. Good sleep may boost your mood, lessen your pain, and help your body work better. Tell your doctor if you can’t get a good night’s rest. They can check for other health problems that might be keeping you awake.
Infections. Your odds of flare go up when you get sick. That includes illnesses such as flu, COVID-19, or other respiratory infections. Vaccines can lower your chances of catching certain viruses. Ask your doctor which ones are right for you.
Menstrual cycle. Your period may worsen your condition. Certain kinds of hormonal birth control may help ease these kinds of flares.
Heat and humidity. This doesn’t affect everyone, but you may notice more symptoms in certain temperatures. You might want to limit or avoid:
- Hot showers or baths
- Long periods in the sun
- Saunas or hot tubs
- Hot food or drinks
Anesthesia. Make sure your surgeon knows you have MG. They’ll need to take special steps to keep you safe during your procedure.
Ask for Help
It’s OK to save your energy for things that are important to you. One way to do that is by leaning on your friends and family. Give them specific ideas of how to help.
For example, you can let others:
- Bring in your mail or garbage bins
- Pick up your groceries
- Do the dishes
- Drive you to the doctor
For more advice, reach out to people who know what you’re going through. You can find like-minded folks through online MG communities or groups such as MG Friends, a peer-to-peer phone support group through the Myasthenia Gravis Foundation of America.
Photo Credit: shapecharge / Getty Images
Richard Nowak, MD, director, Yale Myasthenia Gravis Clinic; assistant professor of neurology, Yale School of Medicine; director, Program in Clinical & Translational Neuromuscular Research, Yale School of Medicine.
Mircea Tudor Iacob, MD, neurologist, Northwestern Medicine Central DuPage Hospital.
Zach McCallum, myasthenia gravis advocate, Oregon.
Conquer MG: “Myasthenia Gravis Questions,” “Symptoms,” “Cautionary Drugs,” “Sleep Right, Sleep Tight,” “Men’s & Women’s Issues and Myasthenia Gravis,” “MG Friends.”
Rush: “Living With Myasthenia Gravis.”
BMC Neurology: “Prospective study of stress, depression and personality in myasthenia gravis relapse.”
The Journal of Neuropsychiatry and Clinical Neurosciences: “Management of Insomnia and Anxiety in Myasthenia Gravis.”
Journal of Medical Case Reports: “Emotional stress as a trigger of myasthenic crisis and concomitant takotsubo cardiomyopathy: a case report.”
UpToDate: “Overview of the treatment of myasthenia gravis.”
Myasthenia Gravis Foundation of Michigan: “Ask The Doctor.”