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WHAT YOU NEED TO KNOW:
What is myotonic dystrophy?
Myotonic dystrophy is an inherited disease that leads to muscle weakness and loss. Myotonic dystrophy causes your muscles to become stiff when you use them. It also causes your muscles to have difficulty relaxing. Myotonic dystrophy affects other parts of your body, such as your heart, eyes, brain, and stomach. Myotonic dystrophy usually begins in adult life.
How is myotonic dystrophy diagnosed?
- Blood tests are done to check for muscle damage and genetic markers of myotonic dystrophy.
- An MRI takes pictures to look for changes in your muscles. You may be given dye to help the muscles show up better in the pictures. Tell the healthcare provider if you have ever had an allergic reaction to contrast dye. Do not enter the MRI room with anything metal. Metal can cause serious injury. Tell a healthcare provider if you have any metal in or on your body.
- An electromyography measures the electrical activity of your muscles at rest and with movement.
- A biopsy is a procedure to remove a small sample of muscle. Your healthcare provider will send the sample to a lab for tests.
How is myotonic dystrophy treated?
There is no cure for myotonic dystrophy. The goal of treatment is to help reduce your symptoms and maintain your strength. You may need any of the following:
- Assistive devices , such as braces, crutches, or wheelchairs, help you move. They can also help protect and support your body to prevent injury.
- Medicines are given to decrease pain or relax your muscles. Your healthcare provider may also recommend medicine to help other medical conditions that may result from myotonic dystrophy.
- Physical and occupational therapy are programs to help you learn how to take care of yourself. A physical therapist will teach you exercises to help improve movement and strength and decrease pain. An occupational therapist will teach you skills to help with your daily activities.
How can I manage my myotonic dystrophy?
- Do breathing exercises at home to help you breathe more easily. Breathe out with pursed or puckered lips. Use your diaphragm to breathe. Put one hand on your abdomen and breathe in, causing your hand to move outward or upward. This helps make more room so your lungs can take in more air.
- Learn safe ways to eat and swallow. Talk with your healthcare provider if you have trouble swallowing. He will show you safer ways to swallow and teach you which foods and liquids are safe to eat and drink. He may also recommend soft foods or thick liquids to make it easier to swallow. In some cases, you may receive nutrition through an IV or tube into your stomach.
- Use a 4-pronged cane or walker to help you keep your balance when you walk. Remove loose carpeting from the floor to reduce your risk for a fall. Use chairs with side arms and hard cushions to 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 and help prevent falls. You may want to put a shower chair inside the shower.
When should I contact my healthcare provider?
- You have a fever.
- You have difficulty having a bowel movement.
- You have more weakness than usual.
- You have trouble swallowing.
- You are depressed or feel you cannot cope with your myotonic dystrophy.
- You have questions or concerns about your condition or care.
When should I seek immediate care or call 911?
- You have trouble breathing.
Care AgreementYou have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your caregivers to decide what care you want to receive. You always have the right to refuse treatment. 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.
Always consult your healthcare provider to ensure the information displayed on this page applies to your personal circumstances.