Who Is Involved in Myasthenia Gravis Care?

Myasthenia gravis is a condition that causes muscle weakness.³ In MG, the immune system makes it harder for the nerves to communicate with muscles in many parts of the body.⁴ In ocular MG, symptoms are limited to eye muscles.⁴ Generalized MG is a more severe type of MG.⁵ It affects the nerves and muscles, causing muscle weakness and fatigue throughout the body, making a variety of familiar activities — like climbing stairs, swallowing and breathing, chewing, brushing your teeth, or combing your hair — very challenging.^5,6

Since MG can cause life-threatening complications, it’s important to find the right specialists for your care.⁴

Neurologists and neuromuscular specialists are healthcare providers who treat diseases affecting the brain and nervous system.^2,7 Either of these types of doctors will ask about your medical, family, and medication history, as well as any current symptoms.⁷ They will also conduct several tests that can confirm a diagnosis of MG. This may include⁸:

• Blood tests to check for immune system proteins called antibodies
• A physical and neurological exam
• Diagnostic tests to measure how well your nerves and muscles work

If you’re diagnosed with MG, your neurologist or neuromuscular specialist will go over your treatment options.²

If you’re diagnosed with MG, your neurologist or neuromuscular specialist will go over your treatment options.² They can help you understand how different treatments work. They’ll recommend the ones that may be most effective for your specific type of MG. You’ll work together with them to identify other specialists you may need and decide on the best plan to improve your quality of life.

Ophthalmologists treat eye conditions, perform eye surgery, and prescribe and fit eyeglasses and contact lenses to correct vision problems.⁹ They’re different from optometrists, who primarily perform eye exams and vision tests, prescribe and dispense corrective lenses, and detect certain eye abnormalities.⁹

Many people with MG experience eye symptoms.³ Double vision and drooping eyelids are often early symptoms of MG.³ An ophthalmologist can work with your neurologist to treat eye symptoms of MG. Some doctors are neuro-ophthalmologists who specialize in problems with communication between the eyes, brain, nerves, and muscles, like MG.²

Rheumatologists are doctors who diagnose and treat diseases that affect the muscles and joints. They also manage autoimmune conditions such as MG.²

Immunologists diagnose, treat, and manage diseases that involve the immune system.¹⁰ MG is an autoimmune condition in which the immune system mistakenly attacks the junctions where the nerves communicate with the muscles.⁴

The thymus gland is an immune system organ that trains your immune cells to fight infections.¹¹ In MG, the thymus may trigger the immune system to attack the junctions where nerves and muscles communicate.¹² In some people living with MG, the thymus becomes enlarged or develops a thymoma — a tumor on the thymus.¹³

Since MG can affect several parts of the body, it’s important to find the right specialists for your care.⁴

If you have moderate or severe muscle weakness from MG, your care team may recommend surgery to remove the thymus.¹¹ A thoracic surgeon may perform the surgery. These healthcare providers specialize in treating and removing organs found inside the chest.²

Your primary care doctor may also play a role in your MG care.² They may never have seen or diagnosed MG before.¹⁴ However, talking to your primary care doctor is often a first step to getting referrals to healthcare providers with experience in treating your MG symptoms.

You can make appointments with your primary care doctor as needed. It’s important to keep them informed about your treatment plan for MG and involved in your overall healthcare. Be sure to schedule your annual checkup to take care of your overall health.²

Depending on how your MG affects you, your healthcare team may include therapists to address specific symptoms related to MG. They can help you feel and function better. Therapy providers for MG may include the following²:

• Physical therapists can show ways to maintain muscle strength and range of motion.
• Occupational therapists can help you function better with daily activities.
• Psychologists can teach you ways to cope with stress, depression, or other emotions.
• Speech therapists can address speech or swallowing issues.
• Nutritionists can help you maintain good nutrition.

4 Tips for Finding the Right Healthcare Providers for MG

Have you been recently diagnosed with myasthenia gravis? Or are you in the process of looking for a new doctor? Here are four tips to help you find the right healthcare provider for your needs.

When making an appointment with a new healthcare provider, be sure to ask what experience they have in treating MG. You can ask:

• How many people with MG are you currently treating?
• How long have you been treating people with MG?
• Do you recommend the same care plan for every person with MG? Or do you suggest different treatments for different people?
• Are you involved in research studying new treatments for MG?

Choose care team members who take your goals and preferences into account. You can always see another healthcare provider for a second opinion.¹⁵

You can always see another healthcare provider for a second opinion.¹⁵ It’s important to put your health first. This means you should choose care team members who take your goals and preferences into account.

If you don’t know where to start looking for an MG specialist, an online search tool can help. The Myasthenia Gravis Foundation of America has created a website to connect people with MG to a list of healthcare providers in their area.

The Genetic and Rare Diseases (GARD) Information Center is part of the National Institutes of Health. GARD offers resources to help people with rare diseases.

Some healthcare providers may not accept your insurance. After you’ve made a list of potential doctors you’d like to see, make sure to give your insurance company a call. They’ll verify which are in-network providers.¹⁶ This can help you avoid extra costs.

Finding a healthcare provider who’s a good fit for you is also important. You need a doctor who listens to your concerns and answers questions in a way you can understand. Your doctor will be your partner in treating MG, so make sure you feel comfortable with them.

If you know someone who sees a specialist, you can ask whether they like their doctor. You can also look online for websites that review doctors. If you join a support group (in person or online, like MGteam), you can ask people with MG what they think of healthcare providers in their area.

Talk With Others Who Understand

MGteam is the social network for people with myasthenia gravis and their loved ones. On MGteam, members come together to ask questions, give advice, and share their stories with others who understand life with myasthenia gravis.

What healthcare providers are part of your myasthenia gravis care team? What tips do you have for others looking for doctors? Share in the comments below, or start a conversation by posting on your Activities page.

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