Myasthenia Gravis

WHAT YOU SHOULD KNOW:

• Myasthenia gravis, or MG, is a disease of the nerves and muscles. Normally, when impulses (signals) travel down the nerve, the nerve endings release a chemical substance called acetylcholine. With MG, there is a defect in how acetylcholine is received by muscle cells. This results in problems in the movement of muscles. Muscles of the eyes, face, neck, arms and legs are commonly affected by MG. Muscles used in swallowing and breathing may also be affected. MG is most common in young women 20 to 30 years of age, and in men 60 to 70 years of age.
  
  
• MG is caused most commonly by a problem in the immune system, such as an autoimmune disease. The immune system is your body's defense system against infections and disease. Symptoms commonly include drooping of the eyelids, drooping of the facial muscles, slurring of speech, and blurring of vision (eyesight). Symptoms may get worse and cause problems with swallowing and breathing.
  
  
• Tests to diagnose MG include blood tests, a tensilon test, and electromyography (EMG). Treatment includes medicines, plasmapheresis, and surgery to remove your thymus gland. Ask your caregiver for more information about these tests and treatment.

AFTER YOU LEAVE:

Medicines:

• Keep a written list of the medicines you take, the amounts, and when and why you take them. Bring the list of your medicines or the pill bottles when you see your caregivers. Learn why you take each medicine. Ask your caregiver for information about your medicine. Do not use any medicines, over-the-counter drugs, vitamins, herbs, or food supplements without first talking to caregivers.
  
  
• Always take your medicine as directed by caregivers. Call your caregiver if you think your medicines are not helping or if you feel you are having side effects. Do not quit taking your medicines until you discuss it with your caregiver. If you are taking medicine that makes you drowsy, do not drive or use heavy equipment.

• You may be taking anticholinesterase medicines to help your muscles and nerves work better together. This medicine may be taken with steroids to improve your energy, strength, and slow your immune system. Both medicines may help a lot, but may have side effects. Do not stop taking these medicines until your caregiver says it is OK.
  
  
• You may be taking immunosuppressive medicines to slow down the immune system. The immune system protects your body from infections and diseases. But sometimes your immune system sees normal cells as bad. This medicine keeps your immune system from harming you. Sometime you take this medicine with steroids. Do not stop taking these medicines until your caregiver says it is OK.

Ask your caregiver when to return for a follow-up visit. Keep all appointments. Write down any questions you may have. This way you will remember to ask these questions during your next visit.

Colds or the flu: Stay away from people who have colds or the flu. Ask your caregiver if you should get shots to keep from getting the flu and pneumonia. Also try to stay away from large groups of people. This decreases your chance of getting sick.

Wellness hints:

• Eating and drinking:
  
  
  • Eat a variety of healthy foods such as fruits, vegetables, whole-grain breads, low-fat dairy products, beans, lean meat and fish. Eating healthy foods may help you have more energy and heal faster. Ask your caregiver if you need to be on a special diet.
    
    
  • Men 19 years old and older should drink about 3.0 Liters of liquid each day (close to 13 eight-ounce cups). Women 19 years old and older should drink about 2.2 Liters of liquid each day (close to 9 eight-ounce cups). Follow your caregiver's advice if you must change the amount of liquid you drink. For most people, good liquids to drink are water, juices, and milk. If you are used to drinking liquids that contain caffeine, such as coffee, these can also be counted in your daily liquid amount. Try to drink enough liquid each day, and not just when you feel thirsty.
  
  
• Start exercising: Talk to your caregiver before you start exercising. Together you can plan the best exercise program for you. It is best to start slowly and do more as you get stronger. Exercising can help make your heart stronger, lower your blood pressure, and keep you healthy.
  
  
• Quit smoking: It is never too late to quit smoking. Smoking harms the heart, lungs, and the blood. You are more likely to have a heart attack, lung disease, and cancer if you smoke. You will help yourself and those around you by not smoking. Ask your caregiver for more information about how to stop smoking if you are having trouble quitting.
  
  
• Avoid stress: Stress may slow healing and cause illness. Since it is hard to avoid stress, learn to control it. Learn new ways to relax, such as deep breathing. Talk to your caregiver about things that upset you.

You may feel safer if you use a 4 prong (pointed) cane or a walker when walking. To keep from falling, remove loose carpeting from the floor. Using chairs with side arms and hard cushions will make it easier to get up or out of a chair. Put grab bars on the walls beside toilets and inside showers and bathtubs. These will help you get up after using the toilet or after bathing. Grab bars will also help to keep you from falling in the shower. You may want to put a shower chair inside the shower.

For support and more information: MG is a life-changing disease for you and your family. Accepting that you have MG is hard. You and those close to you may feel angry, depressed, or frightened. These are normal feelings. Talk to your caregivers, family, or friends about your feelings. You may also want to join a support group. This is a group of people who have MG. Such a group can give you support and information. Call or write one of the following organizations for more information:

• Myasthenia Gravis Foundation of America
  1821 University Ave W, Ste 5256
  St. Paul, MN 55104
  Phone: 1-651-917-6256
  Phone: 1-800-541-5454
  Web Address: http://www.myasthenia.org
  

• National Institute of Neurological Disorders and Stroke
  P.O. Box 5801
  Bethesda, MD 20824
  Phone: 1-800-352-9424
  Web Address: http://www.ninds.nih.gov
  

CONTACT A CAREGIVER IF:

• You have a fever (increased body temperature).
  
  
• You have diarrhea.
  
  
• You have more weakness than usual.
  
  
• You are having problems swallowing.
  
  
• You are so depressed you feel you cannot cope with your illness.
  
  
• You have questions or concerns about your condition and its treatment.

SEEK CARE IMMEDIATELY IF:

• You are having severe breathing problems. This may be a sign that you are having a myasthenic crisis. This is an emergency. Call 911 or 0 (operator) for an ambulance to get to the nearest hospital or clinic. Do not drive yourself.
  
  
  • Myasthenic crisis occurs when symptoms of MG get so bad that it affects the muscles of your lungs. This is a serious condition and may be caused by any of the following:
    
    
    • Certain types of medicines. Always make sure your dentist and other caregivers know that you have MG. Do not take any new medicine until you check with your caregiver first. Not taking enough medicine or not taking your medicine at all may also cause myasthenic crisis.
      
      
    • Infections and colds (viruses).
      
      
    • Physical activity.
      
      
    • Stress caused by pregnancy, surgery, or emotional upset.
      
      
    • Times before, during, or after your menstrual cycle.
      
      
    • Too cold or too hot temperature changes.
    
    
  
  

Copyright © 2008 Thomson Healthcare Inc. All rights reserved. Information is for End User's use only and may not be sold, redistributed or otherwise used for commercial purposes.

The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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