If you recently learned you have myasthenia gravis (MG), you might be overwhelmed by your diagnosis. MG is a chronic autoimmune disease that weakens your muscles because it interrupts how your nerves and muscles work together.
While there’s no cure, MG is treatable with the right care team. Here’s how you can work together to ensure you get the best care possible.
Your Health Care Team and Myasthenia Gravis
It’s important to have honest conversations with your team about your symptoms, how they’re progressing, and if your treatments are working. This might mean you need to see your doctor often after you’re diagnosed so they can figure out what treatments work best for you.
Your primary doctor, like one who specializes in family medicine or internal medicine, may have diagnosed your MG, but they’ll probably refer you to a neurologist. That’s a doctor who specializes in conditions with your brain, spinal cord, and nervous system.
Because MG can affect your speech, vision, and mobility, you’ll likely need other members on your care team, such as a:
- Physical or occupational therapist
- Home health care aid
- Visiting nurse
- Speech therapist (SLP)
The Myasthenia Gravis Foundation of America says it’s important to be your own best advocate, especially when it comes to putting together your health care team.
Consider things like:
- How long they’ve treated people with MG
- If you need simple explanations or you’re OK with clinical language
- Whether you prefer a doctor of your same gender
- If they take your insurance
Talk About Your Treatment Options
Everyone with MG has different symptoms. Doctors don’t know what causes them, but triggers like stress, heat, and lack of sleep, can make them worse.
Treatments — including medicine and surgery — can help control your symptoms. During your appointment, talk to your team about what you want to achieve with treatment. Are you aiming for remission, meaning you have no symptoms or signs of MG? Remission is possible, but most people with MG just want to return to normal muscle function, even if they have mild weakness. Set goals with your team and find the treatment that will help you achieve that.
The most common treatments include:
- Acetylcholinesterase inhibitors like pyridostigmine
- Steroids like prednisolone
- Immunosuppressants like azathioprine
- Those given into your vein (intravenous) or under your skin (subcutaneous)
- Surgery to remove your thymus gland
Your doctor might also suggest you make certain lifestyle changes like:
- Limiting your stress
- Focusing your diet on small, protein-packed meals
- Doing light strength training to improve your balance and keep up your strength
- Resting or napping when you need to
- Avoiding getting too hot or too cold
Tell Your Doctor About All Medicines You Take
Certain prescription and over-the-counter medications can make your MG worse. It’s important for you to tell your MG care team, and all your doctors, what medications and supplements you take. And discuss any new medications with your care team before you take them.
Some drugs that may interact with MG include:
- Certain antibiotics
- Botox
- Penicillamine
- Magnesium
- Statins
- Procainamide
- Immune checkpoint inhibitors
If you already take any of these medications, be sure to let your care team know right away.
Be Honest About Your Symptoms
When you begin seeing your neurologist, it’s important you be honest about your symptoms, especially if you’re already on a treatment regimen.
Your symptoms will come and go, and you’ll probably notice your muscles get weaker the more you use them. Your doctor will want to know all of this, and it’s a lot to remember. So track your symptoms. It will let you know what’s normal for you and can help your doctor assess how they’re impacting your daily life.
You can jot your symptoms down daily in a journal or use a smartphone app. There are several available, including the MyMG app from the Myasthenia Gravis Foundation of America. Most let you add your symptoms to your phone and easily share them with your doctor.
You might have to occasionally fill out the MG Activities of Daily Living scale, or the MG-ADL. It’s eight questions about your symptoms that you score 0 to 3 based on how severe they are, with 3 being the most severe. Studies have shown it’s a good measure of how MG symptoms respond to treatment, so your answers are especially useful to your care team.
Remember, MG is a progressive disease, which means your symptoms can get worse over time. It might first affect your vision, then your face and neck muscles, and finally your arms, shoulders and legs. You need to track how your symptoms progress, too, and tell your doctor.
Call doctor right away if you have any of these:
- Drooping eyelid or blurry vision
- Trouble breathing
- Difficulty swallowing
Tell Your Doctor About Side Effects
Like any medications, MG treatments may cause side effects. They affect people in different ways. Talk to your doctor about how you feel when you take your medication, or if you have:
- Nausea
- Diarrhea
- High blood pressure
- Loss of appetite
- Weight gain
- Chills
- Dizziness
- Headache
- Fluid retention
Your doctor might be able to adjust your dosage or change your medication.
How to Prepare for Your Appointments
Going to your MG appointments with a plan will help you make the most of the short amount of time you get with your doctor. Whether this is your first appointment with a new neurologist or a routine visit with your care team, there are tips that can make it easier for you — and your doctor.
Prioritize what you want to talk about
Make a list of what you want to discuss, and put them in order of importance. If you’ve been tracking your symptoms, you’ll probably want to discuss those, especially if there are notable changes. Or if you’re having side effects from your treatments, prioritize those, too.
Take essential labs and test results
You’re probably seeing many different specialists, and sometimes sharing all of your health information between them isn’t always efficient. Every time you have an appointment, take those important medical records with you to be sure your doctor has the most updated information. This could include anything from new lab and imaging results to recent hospitalization or emergency room visits.
Take a friend or family member
Having a close family member join you at your appointment can be helpful. They can not only provide you with moral support, but they also can take notes while you listen to your doctor. You can refer back to their notes after your appointment to refresh your memory.
Questions to ask your doctor about MG
Be prepared with a list of questions you want to ask your doctor. Write them down so you don’t forget any. Some might include:
- How is MG treated?
- What triggers can make my MG worse?
- Are there any medications I shouldn’t take?
- What lifestyle changes should I make?
- Does physical therapy help with MG?
- Can I still have children?
- Will I pass MG on to my children?
You may also want to ask:
- Can I continue working with MG?
- Can I exercise with MG?
- Are there any alternative treatments or special diets?
- Should I wear a medical alert bracelet?
- Where can I get resources to help me learn more about MG?
- Can I join a clinical trial?
Be prepared to answer questions too
Your doctor is also going to ask you just as many, if not more, questions. You need to be prepared to answer anything they ask you, like:
- What are your treatment goals?
- What symptoms are you having?
- When are your symptoms at their worst?
- Do you know what triggers your symptoms?
- Does anything help your symptoms?
- Which symptoms bother you most?
What to Expect
MG is rare and affects only about 37 out 100,000 people in the U.S. Some people might not know they have it, so the actual number could be higher.
Most people with MG still have a normal life expectancy despite having some physical problems. There have been major advances in diagnosing and treating MG, and some people even go into remission. Maintaining open communication and honest conversations between you and your MG care team helps ensure your MG symptoms remain stable and improve your quality of life.
Show Sources
Photo Credit: DigitalVision/Getty Images
SOURCES:
Myasthenia Gravis Foundation of America: “Overview of MG,” “MyMG Mobile App,”General MG Management,” “CAUTIONARY DRUGS,” “Frequently Asked Questions About Myasthenia Gravis (MG).”
Myaware: “Top tips and considerations for how to live well with myasthenia.”
Rare Disease Advisor: “Myasthenia Gravis Life Expectancy.”
Cleveland Clinic: “Myasthenia Gravis: What It Is, Causes, Symptoms & Treatment,” “Myasthenia Gravis Outcomes.”
Johns Hopkins Medicine: “Myasthenia Gravis.”
National Institute on Aging: “How to Prepare for a Doctor's Appointment.”
Mayo Clinic: “Myasthenia gravis - Diagnosis and treatment.”
NHS: “Myasthenia gravis.”
Muscle and Nerve: “Utilization of MG‐ADL in myasthenia gravis clinical research and care.”
