Myasthenia gravis (MG) is a treatable condition, but there’s no cure. You may see your doctor once a week or every few months as you zero in on what works best for you. A strong, open relationship is key to getting the most out of your care.
When it comes to building a partnership with your medical team, here are some things to think about.
What Kind of Doctors Treat Myasthenia Gravis?
Your regular doctor might diagnose your MG. So could your eye doctor. But you’ll need ongoing care from a neurologist. They’re specialists who treat brain and nervous system disorders.
A general neurologist will likely be able to manage your symptoms, especially if your MG is mild. But it’s a good idea to schedule a consultation first to make sure they know a lot about your condition.
Here are some questions to get you started:
- How many people with MG do you treat?
- How will treatment help my symptoms?
- What tends to be steps 1, 2, and 3 of your treatment plans?
- How long should it take before my symptoms get better?
- How do you manage hard-to-treat MG?
A neurologist will handle the big parts of your care. But MG can affect your daily life in a lot of ways. You may need to work with a wide range of health professionals. You’ll check in with your regular doctor often. Your medical team might also include:
- Physical or occupational therapists
- Speech therapists
- Home health care aides
- Psychologist and psychiatrists
- Social workers
Ask your regular doctor or neurologist to refer you to health professionals who treat MG. Groups like the Myasthenia Gravis Foundation of America can also point you in the right direction. Visit their website to search for specialists near you.
What Information Does My Doctor Need?
You may only have 30 to 60 minutes at each appointment. That gives your doctor only a small glimpse of your life with MG. Make the most of your time by following these steps:
Set treatment goals. Let your medical team know how MG affects your work and personal life. Your doctor wants to help you feel better and find ways to do things that are important to you.
Treatment for MG might include:
- Fast-acting drugs
- Medication that affects your immune system
- Surgery or other therapies
Your doctor may also suggest lifestyle changes such as:
- Stress management
- Healthy diet changes
- An MG-friendly exercise plan
- Social or spiritual support
Keep track of your symptoms. You may feel different minute by minute or day by day. It can be hard to remember everything by the time you see your doctor. Use a notebook or your smartphone to log your symptoms. Record how you feel when you start or stop a medication.
Detailed health notes can be good. But don’t stress yourself out over keeping a daily diary. It can be really helpful to give your doctor a big picture view of your life with MG. Here are some questions they may ask:
- What time of day do your symptoms affect you most?
- Is weakness in your arms and legs worse at the end of the day?
- Do vision problems make it hard to drive or work on a computer?
- Are you having any slurred speech?
- Are you having any trouble chewing, swallowing, or breathing?
Speak up about side effects. Treatment affects everyone in a different way, so tell your doctor how your medication makes you feel. Some MG drugs can cause unwanted symptoms, including:
- Stomach trouble
- Muscle cramps or headaches
- Trouble with mood or sleep
- Weight gain
- Allergic reactions
Your doctor can help you feel better. They might need to:
- Change your dose or schedule
- Pair your medicine with bland foods
- Slow medicine that goes through your veins
- Give you different drugs
Go over all meds and supplements. Some chemicals or substances can worsen MG. That includes certain antibiotics, blood pressure drugs, or minerals like magnesium. Always get the OK from your neurologist before you put anything new in your body. They’ll let you know what’s safe.
Ask about research. Your doctor may be able to get you into a clinical trial. Those are studies where you try new drugs or therapies that aren’t approved for the general public yet. You can find more information through clinicaltrials.gov.
When Should I Get a Second Opinion?
If you’ve just been diagnosed, it may take 3 to 6 months to fine-tune your treatment plan. But there are several ways to manage MG. You may need specialized care if you have serious symptoms, or if you don’t feel like your current plan is helping enough.
And it’s OK to see someone else if you don’t click with your doctor or feel like they’re not taking your concerns seriously.
Before you get a second opinion, you may want to:
- Ask your doctor for a list of MG specialists
- Find neurologists covered by your insurance provider
- Get your medical records
Learn What to Do in an Emergency
Tell your doctor if you have trouble swallowing or you have to stop talking to catch your breath. Those could be signs you’re headed toward a flare. That’ll raise your odds of a myasthenic crisis. That’s when your breathing muscles get too weak to keep your airways open.
Call 911 right away -- or have someone do it for you -- if you’re very short of breath.
You may also want to:
- Keep a medical card with you
- Store your medical information in your smartphone
- Wear a medical ID bracelet, shoe tag, or necklace
Bring up any worries with your medical team. They’ll help you and your family prepare for a crisis. You can also visit the Myasthenia Gravis Foundation of America website for more tips on what to do in an emergency.
