Myasthenia gravis

1. MANAGING YOUR MG By Kim Anderson

2. Symptom • Perhaps your MG started with double vision or drooping eyelids – these are very common symptoms.  Or, maybe you had problems swallowing or even smiling.  Other symptoms you may have experienced include limb weakness or difficulty breathing.  MG can affect any muscle that is under voluntary control. Certain muscles are more frequently involved, such as ones that control eye movements, eyelids, chewing, swallowing, coughing and facial expression. Breathing muscles and movement of the arms and legs may also be affected. Muscle weakness may cause shortness of breath, difficulty taking a deep breath and coughing (breathing involves both voluntary and involuntary muscles).  Other involuntary muscles such as the heart and the digestive track are not affected by MG. • The muscle weakness of MG increases with continued or repetitive activity and improves after periods of rest. The muscles involved may vary greatly from one person to the next. In some people, muscle weakness may be limited to controlling eye movements and the eyelids. This form of myasthenia gravis is referred to as “ocular MG”. “Generalized MG” refers to people have weakness involving muscles outside the eye region. In the most severe form of generalized MG, many of the voluntary muscles of the body are involved, including those needed for breathing. The degree and distribution of muscle weakness for many people falls between these two extremes. When the weakness is severe and involves breathing, hospitalization may be necessary.

3. An exacerbation, or flare, is when your symptoms increase in frequency and/ or become more severe. It is important to contact your doctor and tell him about any change in symptoms or issues. Complications occur when a treatment or medication causes MG to flare, or triggers a crisis. A crisis may occur suddenly or gradually. The ability to stay ahead of the game before it becomes a crisis is crucial. Your physician can intervene to ensure that the exacerbation does not become a crisis. You can stay prepared by downloading Emergency Management materials here. • It is important for you to seek care as soon as you feel a crisis coming on to ensure proper medical intervention. If you are feeling short of breath, it is very important to call 911 or get medical help immediately.  To learn more about emergency management of MG and MG crisis, see here.

4. Voice & Speech • Dysphonia, or voice disorder, is relatively common in the general population but occurs in only about 2% of people with MG. While dysarthria, or slurred speech, is less common in the general population, it affects more than 10% of people with MG.  Difficulty speaking can affect job performance and may cause feelings of social isolation if they have a hard time being heard or understood.

5. Why does this happen? • Human speech is produced by using the muscles of the throat, jaw, palate, tongue, and lips to shape the sound generated by the voice box into consonants and vowels. If MG affects the muscles of the lungs, vocal tract, throat or mouth, we may see voice, speech, and swallowing problems. Problems seen in MG include vocal fatigue, difficulty with pitch or a monotone voice. Typically, the symptoms appear and/or worsen with continuing or extended speech. • The treatment of speech and voice disorders in MG is individualized, based on the cause and severity. Medication may be prescribed or therapy with a speech-language pathologist may be recommended,

6. Swallowing • Swallowing difficulty, or dysphagia, is common in individuals with MG. Swallowing is a complex process involving approximately 50 pairs of muscles. The impact of MG on swallowing may occur gradually or suddenly.  Swallowing muscles may become fatigued, particularly toward the end of a meal or if there is a lot of chewing required. Your physician may refer you to a speech-language pathologist to examine the muscles of the face and throat in addition to observing you eating/ drinking various foods. • The treatment of swallowing difficulty in MG is individualized, based on the cause and severity. Medication may be prescribed or therapy with a speech-language pathologist may be recommended.

7. Management Strategies • Voice & Speech: • Strengthening exercises- be sure to time around peak drug therapy • Compensatory strategies to aid in communication, e.g. using gestures, ask family members and colleagues to ask yes/no questions, writing/ email • Avoid talking when possible • Swallowing: • Smaller, more frequent meals • Softer foods to reduce chewing • Resting prior to meals • Avoiding talking when possible • Consuming cold foods and liquids • Alternating solid food and liquid between bites • Time meals around peak medication times; eating about an hour after taking your medication • Crushing medication into soft foods if swallowing pills are difficult

8. Pregnancy • If you have MG and are considering becoming pregnant, you should discuss your plans with your healthcare provider well in advance. This will ensure that you and your provider have adequate time to adjust your MG treatment plan, reducing risks for you and your baby. The avoidance, or discontinuation, of any medication or treatment can affect your health and your baby’s health. Make sure to consider your own health in discussing family planning with your healthcare provider.

9. Travelling with MG • What to Consider  Travelling with MG requires thoughtful planning and preparation. In order to make your journey as easy and safe as possible, we have provided some information for you to consider as well as some helpful tips. • When planning for travel, think about your overall condition and treatments: • How stable has your MG been in the past year? • Are you prone to flare-ups? • Have you recently changed medication or treatments? • Will weather conditions at your destination exacerbate your symptoms? • Is there a hospital nearby and are they familiar with MG? • Is it peak flu season or infectious diseases concerns at my destination? • Make sure to discuss your plans for travel with your physician, as they can help you weigh the risks of travel. Prior to leaving for your trip, request the most recent consultation note from your doctor, which will have detailed information about your medications and treatments. This will come in handy in case you need assistance or medical care while travelling. You can also ask your doctor for a list of recommended MG providers near your destination. You can also consult with a Travel Clinic.

10. Helpful Tips for Travel  • Be realistic- allow time for rest and reduced physical activity • Bring a resource booklet on MG- information that can help educate health care providers about the condition in case they aren’t familiar with it • Bring a list of medications that may worsen MG • Bring medications in your carry-on bag to make sure that you don’t get separated from them- they should be in the original containers/ prescription bottles for airport security • Make a list of medical terms in the language of the country you are visiting • Bring additional cash or credit cards to make taxi travel easier if the subway or bus is not an option • Bring a medical alert ID bracelet or alert card in the event of an emergency This Photo by Unknown author is licensed under CC BY.

11. If on IVIG treatments, plan to have your treatment a few days before you leave for your trip • Check with your doctor about immunizations needed for your trip, and whether they could exacerbate your MG • Check the details of your medical travel insurance and what’s covered • Travel with someone who knows about your MG and can be your advocate in the event of an emergency • Do you need travel certificates for your medication or treatments? Check with your airline to see what’s needed • Ask about seating arrangements and travel accommodations for disabled passengers

12. For more information go to • https://www.facebook.com/Myasthenia-Gravis-information-from-sault-ste-marie-1826880070950935/?ref=pages_you_manage