Consumer Information

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.

CARE AGREEMENT:

You have the right to help plan your care. To help with this plan, you must learn about your health condition and how it may be treated. You can then discuss treatment options with your caregivers. Work with them to decide what care may be used to treat you. You always have the right to refuse treatment.

RISKS:

MG if left untreated may lead to worsening of symptoms and may later affect your swallowing and breathing. This is called a myasthenia crisis and it is a very serious condition that may cause death. Ask your caregiver if you have any questions about your condition, your medicines, and for treatment options.

WHILE YOU ARE HERE:

Informed consent: You have the right to understand your health condition in words that you know. You should be told what tests, treatments, or procedures may be done to treat your condition. Your doctor should also tell you about the risks and benefits of each treatment. You may be asked to sign a consent form that gives caregivers permission to do certain tests, treatments, or procedures. If you are unable to give your consent, someone who has permission can sign this form for you. A consent form is a legal piece of paper that tells exactly what will be done to you. Before giving your consent, make sure all your questions have been answered so that you understand what may happen.

Eating and swallowing: Your doctor may ask a swallowing therapist to work with you if you have trouble swallowing. This person has special training to help people learn safer ways to swallow. The swallowing therapist will also help you learn which foods and liquids are safe to eat and drink.

You may be fed by an IV or a nasogastric (NG) tube if your swallowing problems are very bad. An NG tube is put in through your nose and goes down into your stomach. The tube may also go directly from the outside of your body into your stomach. This is called a gastrostomy tube.
You may be given thickened liquids to drink because they may be easier for you to swallow. A special powder is used to thicken liquids. You may also be able to eat softer (mashed) foods. You may be able to eat what you usually eat when your swallowing gets better.

Ventilator: A ventilator is a special machine that can breathe for you if you cannot breathe well on your own. You may have an endotracheal tube (ET tube) in your mouth or nose. A tube called a trach may go into an incision (cut) in the front of your neck. The ET tube or trach is hooked to the ventilator. The ventilator can also give oxygen to you.

Medicines:

Anticholinesterase medicine: Anticholinesterase is medicine that increases the amount of acetylcholine in your muscles. Acetylcholine is a special body chemical that helps your muscles and nerves communicate (talk to each other) better. It helps you get stronger. You may also take this medicine with steroids. Do not stop taking these medicines without your caregivers OK.
Immune globulins: Immune globulins can be used to treat many different problems. It may be given to help your immune system fight infection. It may also help if your body does not produce enough of certain kinds of blood cells. This medicine may help if your system fights something in your blood or body that it should not. Ask your caregiver for more information about how immune globulin medicine may help you.
Immunosuppressives: These medicines may be given to slow down the immune system. The immune system protects your body from infections and diseases. The immune system may see normal cells as abnormal. These medicines may help keep the immune system from causing symptoms of MG. Do not stop taking these medicines without your caregivers OK. Stopping on your own can cause problems.
Steroids: Steroid medicine may be given to decrease inflammation, which is redness, pain, and swelling.

Tests: You may need the following tests:

Blood tests: You may need blood taken for tests. The blood can be taken from a blood vessel in your hand, arm, or the bend in your elbow. It is tested to see how your body is doing. It can give your caregivers more information about your health condition. You may need to have blood drawn more than once.
Computed tomography scan: This test is also called a CT scan. A special x-ray machine uses a computer to take pictures of your chest. Your caregivers look at the pictures to check for an enlarged thymus gland. Before taking the pictures, you may be given dye through an IV in your vein. The dye helps caregivers to see the pictures clearly. People who are allergic to iodine or shellfish (lobster, crab, or shrimp) may be allergic to this dye. Tell your caregiver if you are allergic to any of these.
Electromyography (EMG): Electromyography is a test that measures the electrical activity of your muscles. Your muscles are tested at rest and while you are using them. An EMG test may also check the nerves that control your muscles.
Ice test: Caregivers will look for improvement in eyelid drooping after covering your eyelids with ice packs.
Magnetic resonance imaging: This test is also called MRI. MRI allows caregivers to see inside your body. During the MRI pictures are taken of your chest. Caregivers use these pictures to look for changes in your thymus gland.
Tensilon test: During this test any improvement in your weakness after being given medicine may mean you have MG.

Treatment options:

Plasmapheresis: This treatment removes unhealthy antibodies from your blood. An antibody is a material made by your body when it tries to fight off infection. An IV tube is put in your vein and a sample of your blood is taken. The blood sample is put in a machine that separates the bad antibodies from red blood cells. The good red blood cells are then put back in your body through the IV. This short term treatment is done to decrease the symptoms of MG or prevent a myasthenic crisis. This may also be done before surgery to remove your thymus.
Surgery: Surgery to remove your thymus (gland located behind the breastbone) may be done. This is to reduce or prevent future symptoms of MG.

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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