Best Advice

A new reader recently asked the question, “What’s the best advice you can offer to someone who has recently been diagnosed with Myasthenia Gravis?”

Receiving a diagnosis of Myasthenia Gravis (MG) can be alarming, but it doesn’t have to be devastating. This rare, chronic neuromuscular disorder affects the voluntary muscles, often leading to muscle weakness, fatigue, and other life-changing symptoms. The good part is while MG presents challenges, many people are able to successfully manage the condition and maintain a fulfilling life.

Here’s my advice for living well with MG:

1. Respect the Diagnosis, Don’t Fear It – You’ve been diagnosed. That doesn’t mean you have to fear it. Most people diagnosed with MG go on to live full and productive lives. Understanding MG will help you deal with MG, but don’t allow it to take over. Staying strong physically and mentally will go a long way to helping you through this condition.
2. Listen to Your Body – MG symptoms can fluctuate daily. That’s why it’s sometimes called the “Snowflake Disease”. That’s also why it’s important to pace yourself and rest when your body is telling you it needs it. Overexertion can quickly lead to increased weakness, so plan activities accordingly. Prioritize tasks and take breaks to avoid unnecessary strain on your muscles.
3. Work with a Knowledgeable Healthcare Team – Finding a good neurologist is important. Finding a good neurologist who specializes in MG is difficult, but extremely valuable if you’re able to find one. MG is a very complex condition and a doctor who understands the latest treatments can help you manage your symptoms more effectively. Don’t hesitate to ask questions and advocate for your care.
4. Follow your Doctor’s Instructions – Many people with MG take pyridostigmine (Mestinon), corticosteroids, or immunosuppressants. Taking your medications as prescribed is crucial. Skipping doses or stopping treatment without consulting with your doctor can lead to worsening symptoms or even a myasthenic crisis, which requires immediate emergency care.
5. Recognize and Avoid Triggers – Certain factors can worsen MG symptoms, including stress, extreme temperatures, illnesses and infections, and certain medications. Make sure you work closely with your doctor to learn how to recognize and avoid triggers and develop a plan for how to deal with them if exposed.
6. Prioritize Mental and Emotional Health – MG not only affects your muscles; it can play with your mind, as well. Living with a chronic condition can be emotionally draining. It’s okay to feel frustrated or down once in a while; you just can’t allow yourself to stay there. Join a MG support group, like the ones offered on the Myasthenia Gravis Foundation of America’s website: https://myasthenia.org/, consider therapy or counseling, and learn to celebrate small victories. Every good day is a win when you have MG.
7. Eat Smart and Stay Hydrated – MG can cause difficulty in swallowing, making eating a challenge. Eat smaller, frequent meals when your energy levels are higher. Stay hydrated, but sip liquids carefully to avoid choking. Cut foods that are tougher to chew (like steak and other meats) into smaller pieces and choose soft, easy-to-chew foods when you’re experiencing swallowing challenges.
8. Have an Emergency Plan – A myasthenia crisis is a severe muscle weakness that affects your ability to breathe. It can be life-threatening, so be prepared. Wear a medical alert necklace or bracelet and carry a MG medical alert card. There are all kinds of new products on the market that can help you with this. Educate your family and close friends on what to do in an emergency and know where the nearest hospital is located. Some smart watches will automatically call 911 in the event of an emergency or you can subscribe to a service that will send help if you notify them it is needed.

Myasthenia Gravis may change your life, but it doesn’t define you. I try to always remember that I have MG, MG doesn’t have me. With proper management, self-care, and support, you can live a fulfilling life in spite of the challenges MG brings. Be patient with yourself, advocate for your needs, and take things one step at a time.

Most importantly, just like this person who wrote me, don’t be afraid to reach out for help. Together we are #MGStrong!