Consumer Information

Muscular Dystrophy

WHAT YOU SHOULD KNOW:

Muscular dystrophy is also called MD. It is a genetic disease that can affect different groups of muscles in your body. A genetic disease is one that you may inherit from your family and may pass on to your children. Muscular dystrophy may also be a condition that you are born with. MD causes the muscle cells to die. This results in the muscle becoming weak, small, and deformed. MD may also affect other parts of your body, such as your heart, lungs, eyes, and brain. MD is caused by problems in the genes and chromosomes.
There are many types of MD. Each type may have different muscle groups that may be affected. Genetic tests are needed to know the type of MD. Blood tests, muscle biopsy, electromyography (EMG), and magnetic resonance imaging (MRI) may also be needed. Steroid medicines are often given to decrease pain and swelling. You may also need surgery, rehabilitation therapy, and assistive devices such as body braces or crutches. Genetic counseling is important to help you cope with your disease. As your caregiver about these tests and treatments.

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:

Untreated MD may make the symptoms of other diseases worse, which can be serious and life threatening. If you decide to have children, MD may be passed to them. Genetic counseling is important so that you and your family may learn about your disease. Ask your caregiver for more information about MD.

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.

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.

Deep breathing: This exercise should be done once an hour to keep you from getting a lung infection. Deep breathing opens the tubes going to your lungs. Slowly take a deep breath and hold the breath as long as you can. Then let out your breath. Take 10 deep breaths in a row every hour while awake. You may be asked to use an incentive spirometer to help you with this. Put the plastic piece into your mouth and slowly take a breath as deep and as long as you can. Hold your breath as long as you can. Then, let out your breath.

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.

Heart monitor: This is also called an ECG, electrocardiogram, or telemetry. Sticky pads are placed on your chest or different parts of your body. Each pad has a wire leading to a small portable box (telemetry unit), or to a TV-type screen. This lets caregivers see a tracing of the electrical activity of your heart. The heart monitor may help caregivers see problems with the way your heart is beating. Do not remove any wires or sticky pads without asking your caregiver first.

Medicine: You may have one or more of the following:

Muscle relaxers: This is medicine to help your muscles relax. When your muscles relax, you may move more easily and have less pain.
Pain medicine: Caregivers may give you medicine to take away or decrease your pain. Medicine may be given regularly, or may only be given if you ask caregivers for it. Tell caregivers if your pain does not decrease enough for you to feel better. Do not wait to ask for your pain medicine until the pain is very bad. The medicine may not work as well at controlling your pain if you wait too long to take it. Ask your caregiver for help getting out of bed if you feel tired or dizzy.
Steroids: Steroid medicine may be given to decrease inflammation, which is redness, pain, and swelling.

Tests: You may have one or more of the following:

Barium swallow: This test is an x-ray of your throat and esophagus, the tube connecting your throat to your stomach. This test may also be called a barium esophagram. You will drink a thick liquid called barium. Barium helps your esophagus and stomach show up better on x-rays. Follow the instructions of your caregiver before and after the test.
Biopsy: Caregivers remove a small piece of tissue from your muscle to be sent to the lab for tests.
12-lead ECG: This test, also called an EKG, helps caregivers look for damage or problems in different areas of the heart. Caregivers may need to prepare your skin by shaving off some hair, or cleaning it with a gritty lotion. Sticky pads are placed on your chest, arms, and legs. Each sticky pad has a wire that is hooked to a machine or TV-type screen. A short period of electrical activity in your heart muscle is recorded. Caregivers will look closely for certain problems or changes in how your heart is working. This test takes about 5 to 10 minutes. It is important that you lie as still as possible during the test. You may need this test more than once.
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.
Genetic test: This test provides genetic information to learn if a hereditary disease is causing your problem.
Magnetic resonance imaging: This test is also called an MRI. Pictures of your muscles are taken during this test. Caregivers use these pictures to look for changes in your muscles.

Treatment options: You may need one or more of the following:

Assistive devices: These are devices that protect and support your body to prevent further injury. These are devices may include braces, crutches, or wheelchairs.
Rehabilitation therapy: Physical and occupational therapies may be needed to help you become better able to take care of yourself. Physical therapies are exercises to help make your bones and muscles stronger. Occupational therapy uses work, self-care, and play activities to help you in your daily life.
Surgery: This may be needed to treat problems from MD, such as contractures (tightening of muscles affecting movement of joints).

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.

Link to Page

Print Page

Email Page

	Search:
Browse all medications A B C D E F G H I J K L M N O P Q R S T U V W X Y Z	Advanced Search