Traveling with myasthenia gravis: Planning for a stress-free trip

Last updated Nov. 8, 2024, by Agata Boxe
✅ Fact-checked by Ana de Barros, PhD

 

Traveling with myasthenia gravis (MG) has its challenges.

Whether you are going by plane, train, or car, MG can affect your plans if symptoms — such as muscle weakness, vision problems, and fatigue — worsen unexpectedly. Even stress from the trip can trigger flare-ups.

But planning ahead helps ensure you travel safely, confidently, and happily.

Get clearance from your doctor

First, discuss your plans with your doctor, especially if you are flying or plan to do physical activity.

Your doctor can advise you on how to best manage your symptoms, including MG fatigue, and make sure you bring enough medication. They can also suggest other medical considerations to keep in mind.

What to discuss with your doctor:

  • Tell your doctor where you are going and what activities you have planned.
  • Request a travel letter describing your condition and how to treat it.
  •  If flying, ask for a signed letter confirming you are fit to fly.
  • Request a prescription for extra medication in case you need it due to delays or cancellations.
  • Get advice on managing MG fatigue, muscle weakness, and other symptoms when traveling.
  • Make sure you have all required vaccinations for your destination.
  • Ask your doctor if they know of any local health providers familiar with your condition and local hospitals in case of an emergency.

Purchase travel insurance

When you are traveling and have MG, insurance can help you access the medical services you may need in case of a flare-up or a myasthenic crisis, a serious emergency involving severe breathing problems.

Check to see if your current insurance provider will cover your trip or purchase a travel insurance plan.

Make sure your plan covers all medical expenses related to medications, exams, treatments, and all costs related to emergencies — especially those specific to myasthenia gravis — including hospitalization and transportation, such as medical flights back home. It should also provide reimbursement for travel expenses in case you cancel your trip.

For international travel, your plan should cover the same costs plus any other medical costs that may apply specifically to where you will be visiting.

Whether traveling domestically or internationally, ask your insurer which local hospitals and healthcare providers at the destination accept your plan.

Book accessible accommodation

Choosing a place to stay that fits your needs may make it easier to manage MG symptoms such as fatigue and muscle weakness. You want to feel comfortable and avoid stress, which can trigger a flare-up.

Research your options. Consider the amount of space and the amenities you will need.

  • Check accessible travel websites such as Wheel the World and accessibleGO.
  • Call the hotel to confirm they have a room with an accessible bathroom and shower grabs and ask if they have an elevator or request a room on the ground floor, if that’s an option.
  • Request a room near the elevator so you don’t have to walk far.
  • Book flexible and refundable accommodations and flights in case a flare-up changes your plans.

You may want to consider renting a serviced apartment (fully furnished) or a house. They may be a good option when traveling with family, friends, or caregivers, or you want more space or amenities such as a kitchen. Always ask about accessibility.

Prepare your travel essentials

Preparing your travel essentials, including medications, supplies, and equipment, can help ensure you don’t forget anything important.

First, make a list of the medications, clothes, and other items you want to bring.

Include in your packing list:

  • extra medication in case of delay or if you leave it somewhere
  •  an extra pair of supportive shoes if you are planning to walk more than usual
  • your favorite pillow and blanket for better sleep
  • light, portable mobility aids such as a folding rollator or wheelchair if you are concerned about getting tired
  • a cooling vest, also called an ice vest, which is filled with ice packs to prevent fatigue from heat
  • loose clothes made of breathable fabrics to help you stay cool in hot weather.

Make a list of current medications, medical history, allergies, doctor contact information, and print it out to carry with you.

Finally, don’t pack medication in your luggage; keep it with you when in transit.

Manage fatigue while traveling

If you have MG, fatigue can change your travel plans.

However, strategizing beforehand and mimicking your usual daily routine, including taking breaks and naps to recharge, can help maintain energy levels.

  • When flying, book a direct flight if you can.
  • Set up wheelchair assistance at the airport if needed.
  • Give yourself at least one full day to recover from your flight, drive, or train ride.
  • If you are on vacation or touring, take it easy as a marathon of activities scheduled back to back will leave you exhausted.
  • Stay hydrated and cool, especially in warm climates as heat is a common MG fatigue trigger.

Useful resources for your trip

Travel resources such as forums, publications, and organizations for MG can help you prepare for your trip. They can provide information on accessible locations, finding doctors familiar with MG, and advice on what to pack.

Myasthenia Gravis News columnist Shawna Barnes shares advice on living with the disease, including tips on traveling solo. The site’s forums are another good source of information.

Other ways to find information about traveling with MG:

Check for MG organizations or groups in the area you will be visiting, which can recommend local doctors knowledgeable about the disease in case of emergency.

Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.


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