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Managing Your MG

For people with myasthenia gravis, symptoms present themselves differently in each diagnosed person. The combination of symptoms are unique for everyone, which is why MG is called the snowflake disease. But, there are some general ways to manage you own MG and ensure your overall wellness. Open the sections below to learn more.

 

MG Management Strategies

Identifying symptoms and watching for MG crisis are critical to health and wellness. Here are various ways to manage symptoms and deal with travel.

Symptoms      Management Tips       Travel Tips

 

Symptoms

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.

 

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.

 

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.

 

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.

 

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.

 

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

For more information, download our brochure.

 

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.

For more information, download our brochure.

 

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.

 

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
  • 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

MG at Any Age

Myasthenia gravis affects both men and women and occurs across all racial and ethnic groups. Whether a parent, a professional or a young adult with MG, we have resources to help you navigate situations at home or in the workplace, along with daily tips to help you live your best life with MG.

Although myasthenia gravis is rarely seen in infants, the fetus may acquire antibodies from a mother affected with myasthenia gravis—a condition called neonatal myasthenia.  Generally, neonatal myasthenia gravis is temporary and the child's symptoms usually disappear within two to three months after birth.  Rarely, children of a healthy mother may develop congenital myasthenia.  This is not an autoimmune disorder and can cause similar symptoms to myasthenia gravis.

 

Whether a parent, a professional or a young adult with MG, we have resources to help you navigate situations at home or in the workplace, along with daily tips to help you live your best life with MG.

 

Becoming a Mother with MG

If you have myasthenia gravis (MG) and are considering pregnancy, make sure to discuss your plans with your MG health expert and your gynecologist/ obstetrician well in advance. This will ensure adequate time for you and your provider to adjust your MG treatment plan, allowing for the best outcomes and minimizing risks to you and your baby. The impact on your own health when adjusting your treatment plan for pregnancy is also an important consideration. A support system is very important throughout this process; a spouse, a parent, a sibling or a friend can help you navigate this with your healthcare team. The support system will also prove a great help post-baby, making sure that you get rest and nutritious foods while caring for a new child.

 

Treatment of MG during pregnancy tends to be similar to treatment for non-pregnant individuals with MG. For those who are managing and controlling their MG well, they tend to remain stable throughout their pregnancy. Generally, the “rule of thirds” applies; a third of people improve, a third remain stable and a third experience worsening of symptoms. If MG symptoms do worsen, it is more likely to occur in the postpartum weeks, after the delivery of your baby.

 

As everyone’s MG is different, and pregnancy presents its own unique needs and symptoms, it is important that you discuss your medication and treatment options with your healthcare team. For your convenience, see this list of “Cautionary Drugs”  to discuss with your provider. For more information, download our brochure.

 

Commonly Asked Questions:

 

Will my baby inherit my MG?

Most people with MG will not pass on MG to their children. Women with congenital myasthenic syndromes (CMS) are at risk for transmitting MG to their children. See more about congenital myasthenic syndromes here

 

What effects does MG have on delivery?

As a pregnant woman with MG, you can expect to have a typical labor and vaginal delivery. However, a cesarean may be necessary for because of fatigue and a long labor.

 

Will my baby be healthy?

Overall, the risk of birth defects does not increase for women with MG. In rare cases, transient neonatal myasthenia may occur, which does not signal long-term or future MG. See more about transient neonatal. myasthenia here

 

How will pregnancy affect my MG?

About one-third of women will experience worsening of MG symptoms, while the remainder remain stable or experience improvement.

 

How will MG treatment affect my ability to get pregnant?

Generally, treatment with pyridostigmine (mestinon) does not affect the ability to become pregnant. Make sure to discuss your medications and treatment plan with your healthcare team in advance if considering pregnancy.

 

Also visit our Learn More About MG page here.

 

Being in the Workforce with MG

Effective communication in any job is essential to maintain a good employer/employee relationship. The decision to notify your employer about your MG is YOUR decision alone. You are not legally obligated to tell them. However, you are encouraged to inform your employer about MG and how it may affect your work. Your information will help the employer gain a broader understanding of MG and foster discussion about possible solutions to any challenges that your symptoms may present.

 

If you choose to let your workplace know about your MG, they may be able to provide a “reasonable accommodation” to help you fulfill your job responsibilities. Let your employer know what you need in order to do your job well. Your MG should work with your career, not against it. Be honest. If you are getting tired, communicate that. If you cannot physically do something, let your employer know. Work with them to find solutions.

 

Stressful situations on the job will often cause MG symptoms to worsen. Make your employer aware of this, so that they do not misinterpret the situation as poor performance. An especially busy time or stressful situation on the job may call for some brief time off to allow you to rest and recover. Flex time is a great option that can help meet your needs and your employer’s needs. If your workplace does not have a formal flex time policy, you can suggest it. Explain that through an alternate schedule, you can optimize your performance and productivity for the employer. If the employer remains skeptical, propose a month long trial schedule to help them assess the benefits of such an arrangement.

 

When someone in the workplace looks at you differently, perhaps because of eyelid ptosis or your inability to smile, use this as a teachable moment. Try to explain succinctly. You might say, “I see you are wondering why my eyelids seem so droopy (or why I’m wearing an eye patch, etc.). I have MG.  It’s an autoimmune disease that causes muscle weakness. This is one symptom. If you are curious, you can learn more at myasthenia.org.” Become the teacher, and share your knowledge to educate people around you.

 

For more information about your rights in the workplace, as well as helpful tips for accommodation, please see here.

Wellness Strategies

A "wellness strategy" is a plan of action you can develop to live as full a life as possible with your myasthenia gravis (MG). As you make a plan to live your best life with MG, you may need some tips and tools to help you along the way. We’ve pulled together some advice from leading experts in MG; ranging from doctors, to community leaders to people living with MG.

Talking About MG       Tips for Daily Living       Exercise and Fitness      Nutrition      Employment

 

Talking About MG (with friends, at work)

You are learning about myasthenia gravis (MG) and it can be confusing. It is also confusing for your family, friends and coworkers. What do you share? Only you will be able to determine the level of information and support that feels appropriate for you. However, a good starting point is sharing facts about MG with family, friends and coworkers to help them better understand your condition.  

 

How then do you communicate about MG? Sometimes it is helpful to share our Infographic (link to Infographic) with those learning about MG for the first time.  This provides a pictorial overview of MG and may answer many questions. What does MG look like? Who can get MG? Where can I learn more about MG?

 

After sharing this, you can ask people to share any questions they have. A coworker may be concerned about how MG affects your work; a family member may be concerned about how to support you in this journey; a friend may be concerned about how it affects your social activities.

 

Be comfortable with what you share, and how much detail you reveal. Remember, educating others can help you build a support system so you can live your best life with MG!

                       

 

Tips for Daily Living

Living your best life with MG is possible, but you may have to adjust to your limitations or do things differently. We’ve assembled some of the best coping tips from people with MG here. This is not a complete list, but a good start to managing your MG.  

 

Conserving Energy
“When my energy level is low, I [was told to] conserve energy for the important things like swallowing and breathing by adjusting the way I do my activities. Don’t stand when I can sit, and don’t sit when I could be laying down.”

 

“Help conserve your energy by planning the activities that take more energy for the time of day when you feel your best, or after your mestinon “kicks in”. Activities like exercising, house cleaning or lawn mowing should be done when you feel your best. Plan quieter activities such as paying bills or computer work for when your energy level is dwindling.”

 

Staying Cool
“Sometimes, heat may exacerbate your MG symptoms. I beat the heat by keeping a cooling towel in the refrigerator and apply it to the back of my neck when I get too hot.”

 

“When it’s hot outside I stay in the air conditioning. Don’t have AC? Go to your local library, movie theatre, or shopping mall to get cool.”

 

Accepting Help
“Don’t be afraid to ask for help when you need it. It is not a sign of moral weakness. Most of the time people are happy to be able to help you in some way. It not only helps you but also makes them feel needed.”

 

Quality of Life Assessment & myMGapp

How are you doing? You will hear this question often, but every day might be different. To help you assess how you are doing and living with your MG, download the MGFA MyMG Mobile App app. The app will cover information that may not come up in a typical doctor visit to help you assess the overall impact of MG on your life. Through questions about activities of daily living and quality of life, it can track multiple aspects of MG to encourage discussion with your healthcare professional.

 

Exercise and Fitness

Myasthenia gravis presents many challenges, not least of which is reduced fitness due to limited capacity for continued muscle use.  This is especially true at the onset, where people often experience long delays in obtaining a proper diagnosis of MG. Many experience weakness and fatigue for prolonged periods before achieving some degree of remission (with or without medication). But for most patients with MG, eventually there is an opportunity to recover strength. Every MG patient has their own path, often fraught with challenges along the way. For those helped by treatment, or who are experiencing remission, there are ways that you can stay active.

 

By setting reasonable goals and measuring progress, you can improve your ability to maintain an exercise routine. For example, you could start with 2 minutes a day on a treadmill and work your way up to 10 minutes, making sure to stay at a pace that works for you. If sports are not for you, also keep in mind that low-impact exercises like walking, yoga and band resistance exercises are also great options to stay active.

 

While it can be hard to get motivated, we have some tips that can help you incorporate a fitness routine into your daily life:

 

  • Set reasonable goals- everyone’s MG is different, make sure to find what works for you
  • Allow time for rest periods and/or breathing exercises
  • Measure your progress- this can help you see the change and motivate you towards your overall goal!
  • Get adequate sleep during nighttime
  • Don’t go it alone- having a partner to exercise with is a great way to stay motivated!

 

Nutrition

Good nutrition is important for everyone. This is especially true if you have a chronic disorder like myasthenia gravis (MG) where some people may experience difficulty chewing and swallowing. To maintain normal body function, you need a balanced diet with adequate nutrients.

 

There are some areas of nutritional concern for people with MG. First, be aware that nutritional deficiencies frequently result from making poor food choices. Fatigue and difficulty with chewing and swallowing may interfere with nutrition and create safety issues. Diet modifications may be advisable if you are taking certain medicines for MG.

 

Choose a Sensible Diet

Choose a healthful diet with a variety of foods containing the nutrients that you need. Your age, gender, size and activity level determine the number of calories that you require daily. A nutritious daily diet includes foods from five food groups. Limit fats, oils, sweets and salt. Choose sensible portion sizes. Avoid empty calorie foods. To learn more about portion sizing and a balanced diet, please see: myplate.gov

 

Energy Conservation and Mealtime

Try to plan your meals when your strength is optimal. Eat slowly and rest between bites if necessary. When fatigue is a problem later in the day, try eating your main meal earlier. Instead of three larger meals, try eating five or six smaller meals. It can also be helpful to time meals around peak medication times, eating about an hour after taking your medication.

 

Easier Chewing and Swallowing

Modifying the consistency of food can make it easier for you to get proper nutrition when you are having difficulty with eating and drinking. Prepare foods in a way that makes them soft, tender and easy to chew and swallow. Chop, mash or puree foods. Moisten dry foods with liquid. While eating, take sips of liquid to soften foods in your mouth and help prevent solids from sticking in your throat. The thin consistency of fluids makes them more likely to get aspirated into the lungs because they travel quickly down the throat. Commercial thickeners can be added to liquids to give them a more manageable consistency and reduce this risk.

 

Body position and your mealtime environment are important. When eating, sit upright in a chair and tilt your head forward. If you continue to have problems with eating over an extended time period, evaluations by a nutritionist and a speech language pathologist may be helpful.

 

Special Diet Modifications

Occasionally, anticholinergic medicines like Mestinon® may cause cramping and diarrhea. If this is a problem, check with your doctor to see if the dosage can be reduced or if he/she wants to add any medicines to help control the diarrhea. Do not take any over-the-counter antidiarrheal drugs without first consulting with your doctor. If diarrhea persists, avoid foods that aggravate this condition. Aggravating foods include those with a high fat content, greasy foods, spicy foods and dairy products. One exception is yogurt with active cultures, which is beneficial. Avoid otherwise healthy foods with insoluble fiber like raw vegetables, bran, dried or unpeeled fruit, whole grains and popcorn. Coffee, teas and chocolate containing the stimulant caffeine will speed up the action of your intestines, making diarrhea worse, too.

 

Diarrhea can cause fluid and mineral loss. Choose foods that are mild and easily digestible but are rich in minerals like potassium and sodium (unless you are on a sodium-restricted diet). Try eating smaller amounts of food and liquid throughout the day instead of large meals. Include foods like white rice, applesauce, very ripe bananas, baked or broiled chicken or fish. Light soups with barley or white rice and mild vegetables are nutritious and helpful, too.

 

When taken over an extended period of time, steroid medicines such as prednisone can cause bone thinning. If you take steroids, it is important to have adequate amounts of calcium and vitamin D in your daily diet. Milk products, cooked dark green leafy vegetables, dried beans, canned sardines or salmon and calcium-fortified juices and cereals are rich in calcium. Talk to your health care provider about recommended dietary allowances (RDAs) for vitamin D and calcium and how much of each you need daily in food and supplements.

 

Steroid use can also cause fluid retention, so it is important to reduce sodium and increase potassium in your diet. Avoid salt. Cook with salt substitutes or use other spices. Especially avoid smoked and cured meats, canned soups and vegetables, pickled products and salted snacks or any food item that lists salt or sodium as one of its main ingredients.

 

Employment

 

Balancing a Career with MG 

When choosing a career, choose something that you are passionate about and that meets your financial needs. In your job search, it is important to take into account your MG. During job interviews, ask about the workload; ask about repetitive tasks, physicality of the job, or how much speaking is required if you struggle with slurred speech. Ask about opportunities for job shadowing to get a sense of daily tasks and expectations. Prior to accepting the job, consider work schedule and flexibility: when are you strongest and weakest, and will your job accommodate that? Would your job allow you to take a longer lunch break or more frequent breaks to corporate rest in to your daily schedule?

 

When considering your career, realize that work is always going to be a part of the picture. Be mindful of stress and physical toll on your body. Do your best to eat healthy. Rest is vital. Remember to slow down and balance priorities between work, family and hobbies.

To learn more about employment resources for people with MG, please see here.

 

In the Workplace: Examples, Accommodations and Your Rights under the ADA

It is important to consider telling your employer if you think you may need some help, now or in the future, so that they can make minor adaptations to the working environment. For example, if your job involves driving, you must notify the DVLA (Driver and Vehicle Licensing Agency) of your MG. Under the Road Traffic Act of 1988, it is an offense if you fail to notify the DVLA about a disability. Or if you need regular breaks, you need to explain to your immediate boss why you may not be at your desk all the time.

 

We can offer some specific examples as well to help provide more context. A teacher with MG had difficulty meeting the physical demands of her job due to muscle fatigue. After talking with her employer, she received a full-time teaching aide, had supplies/equipment moved closer to her desk, and was allowed several short rest breaks during the day. Another example is a delivery person had difficulty loading and unloading his truck due to lower extremity weakness from MG. He was accommodated with a transfer to a less physically demanding delivery route. An additional example was that an administrator had problems handling stress and had some double vision from MG. He was allowed to take rest breaks, assigned a support person in the workplace, and provided a reader as an accommodation.

 

There is statutory protection and benefits available if your ability to work is limited, either temporarily or permanently. The Americans with Disabilities Act (ADA) protects qualified individuals from discrimination in employment, public services, transportation, public accommodation and telecommunication. This Act provides equal opportunity to qualified individuals. Under the Act, a qualified individual is defined as one who must have a record of, or be regarded as, having a substantial impairment. A substantial impairment is one that significantly limits or restricts a major life activity such as hearing, seeing, speaking, breathing, performing manual tasks, caring for oneself, learning or walking. If MG has caused a substantial impairment that limits or restricts a major life activity, this law applies to you. Employers must reasonably accommodate the disabilities of qualified applicants or employees unless undue hardship would result. The part of ADA that prohibits job discrimination is enforced by the U.S. Equal Employment Opportunity Commission (EEOC) and State and local civil rights enforcement agencies that work with the commission. As long as you are able to reasonably perform the main tasks of your job, employers are required to make reasonable accommodations for you. 

 

Helpful Accommodation Tips for the Workplace

 

Fatigue/Weakness:

  • Reduce or eliminate physical exertion and workplace stress
  • Schedule periodic rest breaks away from the workstation
  • Allow a flexible work schedule and flexible use of leave time
  • Allow work from home
  • Provide a scooter or other mobility aid if walking cannot be reduced

Vision:

  • Provide large print material or screen reading software
  • Control glare by adding a glare screen to the computer
  • Install proper office lighting
  • Allow frequent rest breaks
  • Magnify written material using hand/stand/optical magnifiers
  • Alternate covering one eye

Speech Impairment:

  • Provide speech amplification, speech enhancement, or other communication device
  • Use written communication, such as email or fax
  • Transfer to a position that does not require a lot of communication
  • Allow periodic rest breaks

Fine Motor Impairment:

  • Implement ergonomic workstation design
  • Provide alternative computer and telephone access
  • Provide arm supports
  • Provide writing and grip aids
  • Provide a page turner and a book holder
  • Provide a note taker

Gross Motor Impairment:

  • Provide parking close to the worksite
  • Install automatic door openers
  • Provide proper ergonomics
  • Make sure materials and equipment at workstation are within reach
  • Move workstation close to other work areas, office equipment, and break rooms

For additional resources, please see here.

Your Healthcare

Your healthcare is exactly that, yours. As a patient trying to live their best life with MG, you are your best advocate. Please see some helpful information below on choosing your healthcare team.

Find a Doctor

Choosing a doctor is one of the most important decisions you can make in managing your MG. It is important that you are comfortable with your doctor and that you make decisions together regarding your care.

 

Choosing Your Health Care Provider: When choosing your MG healthcare provider, it is important to know your style. Do you need someone with whom it is easy to talk? Perhaps you don’t need lengthy explanations, just someone with experience treating MG? Perhaps you are comfortable talking to a doctor of the same gender? Whatever your needs are, make sure to keep them in mind when finding the right healthcare professional for you.

 

Partners in MG Care: We have created a network of quality MG healthcare providers from around the U.S. You can learn more about Partners in MG Care here

 

Find a Doctor Near You:  You can find an MG healthcare provider in your area here
 

Be a Take Charge Patient

What does it mean to be a “take charge” patient? It means that you oversee making important decisions about your health. Having a diagnosis of MG may be overwhelming, but by arming yourself with knowledge, you can “take charge” of your MG care. See our 2019 National Conference presentation on this topic here.

 

Your Healthcare Team
Assembling your healthcare team is an important first step in managing your MG. You can start with a neurologist or other MG expert, but you will also need an internist or general practitioner to help manage your overall health. Depending on your situation, you may also need a visiting nurse, physical therapist, or home health care aide. 

 

Taking Charge of Your Health                  

It is important to inform yourself about healthcare choices available. The more you know about MG, the better equipped you are to make decisions about your health. 

 

Know Your Rights

You have rights as a patient. You may choose to find another doctor or ask for a second opinion at any time. Our Resources page has a wealth of information concerning insurance coverage, government programs and other information that can help you along the way.

 

Track Your Symptoms with the My MG App

How are you doing? You will hear this question often, but every day might be different. To help you assess how you are doing and living with your MG, download the myMG app. The app will cover information that may not come up in a typical doctor visit to help you assess the overall impact of MG on your life. Through questions about activities of daily living and quality of life, it can track multiple aspects of MG to encourage discussion with your healthcare professional.

 

The myMG app also puts podcasts and cautionary drug information right in the palm of your hand.

 

What You Need to Know in an Emergency

If you are experiencing severe shortness of breath, severe swallowing and choking problems, or are unable to walk or talk, call or have someone call 911 now.

 

If an emergency happens, the best thing to do is to plan and inform yourself in advance. To help you stay prepared, please see emergency management resources here. If possible, bring someone with you that can communicate on your behalf if your voice weakens. If time permits, call your doctor’s office and inform them of your impending Emergency Room visit so they may communicate with Emergency healthcare personnel.

 

Preparing for a Hospital Stay

Have you been told you need an inpatient hospital visit? If so, a few helpful tips may make your hospital stay a little easier:

 

  • Bring toiletries – a toothbrush, toothpaste, deodorant, hair brush, and soap is usually enough
  • Pack comfortable clothing – if the hospital allows you to wear your own garments, loose clothing can help you stay comfortable in an unfamiliar setting
  • Bring mestinon in its original prescription bottle – the hospital pharmacy may not have mestinon immediately available
  • Have mestinon at the bedside – ask your doctor or hospital staff to have medication nearby  so you can take it on time if the nurse is unavailable

 

Health Insurance

Health insurance comes in many different forms; there are public and private insurance plans as well as group-based and individual insurance plans. If you are not eligible for insurance through an employer, you may be eligible for public health insurance programs, like Medicaid and/ or Medicare.

 

If you do not qualify for public health insurance programs or insurance via an employer, you can obtain coverage through a State-operated exchange or the Marketplace.  Please note that there is a fixed period for insurance enrollment via the Marketplace, called “Open Enrollment”, unless you have a special circumstance such as loss of health insurance, a move, a new baby or a marriage.  To see if you may be eligible to apply outside of the Open Enrollment period, please see here.

 

  • To see the options for your State, please visit: www.healthcare.gov/marketplace-in-your-state/  
     
  • To enroll for insurance coverage via the Marketplace, please see www.HealthCare.gov or call 800-318-2596          
  • You can also obtain coverage directly through an insurance company or an insurance broker licensed by your State.


Please note that under the current law, health insurance companies cannot refuse health coverage or charge you more just because you have a “pre-existing condition”, a condition that you had before you enrolled in health insurance.

 

Cost

Health insurance plan costs vary widely, depending on where you live, your age and what level of coverage you are looking for. Health insurance plans available via the Marketplace are based on an income scale. For people in certain income categories, you may qualify for tax credits that you can apply to the costs of your health insurance.

 

There are different types of costs associated with health insurance coverage, please see an overview below that can help:

 

  • Premium: Payment made to your health insurance company to keep your plan active, it is usually charged on a monthly basis
  • Deductible: A fixed amount that you have to pay every year towards medical costs before your health insurance begins payment on medical costs, some plans do not have deductibles
  • Coinsurance: A percentage of the medical bill that you are responsible for after you have paid your deductible, some plans do not have coinsurance
  • Copayment or “copay”: A fixed fee that you pay every time you visit the doctor or fill a prescription, some plans do not have co-payments


Please keep in mind that many health insurance plans are required to cover preventative services without charging you a copayment or coinsurance, even if you have not met your deductible for the year.


Prescriptions

As every plan is different, it is important to understand if your medications are covered by your plan, or if you may need additional coverage to help. Different medications fall into different categories, or “tiers”. For example, if you have Medicare, you may need to enroll in Medicare Part D or a Medicare Advantage Plan, which covers prescription drugs.

 

If your medications are not covered, or you have high costs for your prescriptions, please see a list of resources that can help pay for your medications. 

Home Injury Prevention

More people are injured in their homes than anywhere else. Home safety is a concern for some people with myasthenia gravis (MG). You can minimize your safety risks—especially your risk of falling— if you follow some suggestions. With some forethought, most accidents can be prevented.

Questions you may have about preventing and preparing for possible home injuries


Things to Do if You Are Injured

  • Call for help at once. Keep a telephone and emergency numbers on a low table. It will be easier to reach if you fall and have difficulty getting up.
  • Consult with your doctor even if you don’t think you are badly hurt.

 

General

  • If you have an unsteady gait, using a walker or a cane after training by a physical therapist can lessen the risk of falling. Don’t hold onto furniture or walls for support.
  • Some insurance companies will pay for an occupational therapist to assess your home for safety and to help you make activities of daily living easier.
  • Avoid overheating your home, as excessive heat can make myasthenic symptoms worse.
  • Wear low-heeled, comfortable, supportive footwear with non-skid soles at all times.
  • Have your vision checked annually.
  • Talk with your pharmacist and health care provider about medications that may make you sleepy or dizzy.
  • Exercise regularly.   
  • Be alert for objects that might cause you to trip. Keep walkways clear.
  • Repair any holes or rough spots in your flooring, walkways or steps.
  • Mop up floor spills immediately.
  • Avoid rushing to cross the street or to answer the telephone or doorbell.
  • Use non-skid wax or avoid waxing floors.
  • Make certain that rugs lie flat. Secure them with carpet tape or tacks, double sided tape or non-slip backing. Don’t use throw rugs.
  • Install sturdy railings on both sides of staircases.
  • Fix loose or uneven stairs.
  • Install lights at the bottom and top of stairs.
  • Keep stairs free of clutter.
  • Take time to regain your balance when rising from a chair or bed.
  • To maintain balance when picking objects up off the floor, stoop down, bending your knees rather than leaning forward.
  • Sit in chairs that have armrests sturdy enough to assist you when getting up and down.
  • Do not use a chair as a step stool.
  • Use tape on electrical wires or coil them next to the wall to avoid tripping.
  • Place light switches so that you can turn on lights before walking into a darkened room.
  • Install bright lighting throughout the house.
  • Change light bulbs as soon as they go out.
  • Install smoke alarms on every level of your home and be certain that they work.
  • Install outdoor lights at all entrances to your home.
  • Make a list of emergency phone numbers and addresses and keep them in a practical place.
  • In case of fire, have an emergency exit plan. Keep a fire extinguisher handy.
  • Keep a flashlight in a convenient location in case of power outages.
  • Consider using a personal medical alarm help button system such as Lifeline®.
  • Wear a medical identification bracelet or pendant.
  • If you live alone, have a family member or friend check on you daily.
  • Program your phone with emergency numbers in your contact list.

 

Bedroom Safety

  • Place your bed within easy reach of lights and telephone.
  • Use a night light to light the way between your bed and the toilet.

 

 Bathroom Safety

  • Limit the time you spend in the shower or bath to avoid weakness.
  • Have someone assist you with bathing if weakness is a problem.
  • Put non-skid strips or a rubber mat in the tub or shower.
  • Install grab bars on the wall or side of the tub or shower.
  • Use a shower chair or bath seat with rubber grips if you are unsteady.
  • Keep the floor dry to avoid slipping.
  • Use a hand-held showerhead to make it easier for help in bathing and rinsing off.
  • Use liquid soap or soap on a rope to avoid dropping the soap.
  • Install a raised toilet seat and grab bars on the wall if you have difficulty rising from a sitting position.
  • To avoid burns, set the hot water temperature at 120° or lower.

 

Kitchen Safety

  • Slide heavy containers of food along the counter (or use a cart) instead of lifting them when arms are weak.
  • Put food in smaller containers, which are easier to lift and handle.
  • To prevent fire, keep loose fitting clothes, towels and curtains away from the stove burners.
  • Place items that you use frequently within easy reach so there is no need to climb.

Vaccination

It is generally believed that vaccinations (e.g. influenza, COVID-19, Shingles) are safe for patients with MG. Most MG specialists believe the benefits of immunization far outweigh any small risk related to possible transient worsening of MG symptoms.

  • Exception: If you are taking immunosuppressive medication, such as prednisone, azathioprine or mycophenolate, it is usually recommended that you avoid live, attenuated vaccines. Examples of live, attenuated vaccines include the shingles vaccine and the nasal spray form of the influenza vaccine (the influenza injection is inactivated and thus not alive, so it is much safer in immunosuppressed patients). It is important that you discuss this with any doctor when considering a vaccine. If you are not sure, ask your doctor if you are taking immunosuppressive drugs and, if so, whether the vaccine is safe for you. Of note, most vaccines are inactivate (e.g. dead), but few vaccines are alive and attenuated (i.e. the pathogen is alive but not very virulent and thus immunizes the patient without causing the disease). As the live, attenuated vaccines carry higher risk for those who are immunosuppressed, this technicality is important and is always worth consideration.

 

Shingrix Vaccine: Shingrix is a new non-live vaccine against varicella zoster, the virus that causes Shingles and Chicken Pox. Shingles occurs most often in patients with compromised immune system function. Many of the treatments for myasthenia gravis increase the risk of developing Shingles.

 

The Shingrix vaccine has been shown extremely effective in two large clinical trials of adults over the age of 50. The vaccine is now recommended by the Centers for Disease Control (CDC) for all adults over age 50. Unlike the previous shingles vaccine, Shingrix does not have a live virus component. Shingrix is likely safe for patients with reduced immune system function, like MG patients taking immunosuppressant medications. Studies are underway to evaluate efficacy of Shingrix in patients with reduced immune system function. MG patients over age 50 should discuss the risks and benefits of Shingrix with their primary care doctor and neurologist.

A World Without MG