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Mitochondrial Myopathy Discharge Instructions


About this topic


Neuropathy, ataxia, and retinitis pigmentosa is also called NARP. It is a health problem caused by damage to the mitochondria. Mitochondria are small structures in the cells that give energy. NARP causes numbness, tingling or pain in the arms and legs, muscle weakness, and problems with balance and coordination. This condition also causes eyesight loss because of the changes in the light-sensitive tissue that lines the back of the eye. This condition is passed down from the mother. ‚  
Signs of NARP can be: ‚  
  • Nerve problems: Numbness and tingling in the arms and legs, and seizures
  • Eye problems: Loss of eyesight and loss of retinal function (retinitis pigmentosa)
  • Brain problems: Problem with learning and using knowledge, loss of thinking and mental action (dementia), and delay in physical and mental development
  • Pain in the arms and legs
  • Muscle weakness
  • Problem with balance and coordination
  • Loss of hearing
  • Heart conduction defects

NARP can be treated with drugs and therapy. ‚  

What care is needed at home?


  • Ask your doctor what you need to do when you go home. Make sure you ask questions if you do not understand what the doctor says. This way you will know what you need to do.
  • Make your home safe. This will help keep you from falling.
    • Remove loose wires and rugs from the areas you walk through. Fix any loose flooring that may cause injury.
    • Avoid going out at night. Turn the light on at night in hallways leading to bathrooms.
    • Use a cane, walker, or a wheelchair to help you get about safely if you are having balance problems or trouble walking.
  • Keep yourself safe.
    • Protect your feet from injury by wearing shoes at all times. Wear shoes that fit. Wash your feet with lukewarm water and soap and avoid using hot water.
    • Do daily checks on your skin on any parts that have less feeling in them.
    • Use lotion or any products that prevent dry skin.
    • Prevent putting too much pressure on the areas with nerve damage.

What follow-up care is needed?


  • Your doctor may ask you to make visits to the office to check on your progress. Be sure to keep these visits. Together you can make a plan for more care.
  • You may need a physical therapist to teach you exercises that will help you improve movement and reduce pain.
  • Your doctor may suggest talk therapy, this may help you understand your condition and ease worry.

What drugs may be needed?


The doctor may order drugs to: ‚  
  • Help with pain
  • Improve nerve conduction
  • Stop muscle jerks
  • Help you sleep

Will physical activity be limited?


  • Physical activities may be limited due to signs from NARP. Talk to your doctor about the right amount of activity for you.
  • Walking and moving from one place to another may get harder.
  • You may have problems driving because of eyesight problems.

What changes to diet are needed?


Talk to your doctor or dietitian about your personal diet plan. Ask if there are foods or additives you need to avoid. Talk to your doctor about how much energy you need to take in each meal. ‚  

When do I need to call the doctor?


  • Signs of infection. These include a fever of 100.4 ‚ °F (38 ‚ °C) or higher, chills, or wounds that will not heal.
  • Problems seeing or hearing
  • More muscle weakness or problems moving
  • More problems with sensations in your arms or legs
  • Seizures
  • Health problem is not better or you are feeling worse

Teach Back: Helping You Understand


The Teach Back Method helps you understand the information we are giving you. The idea is simple. After talking with the staff, tell them in your own words what you were just told. This helps to make sure the staff has covered each thing clearly. It also helps to explain things that may have been a bit confusing. Before going home, make sure you are able to do these: ‚  
  • I can tell you about my condition.
  • I can tell you ways to help me stay safe.
  • I can tell you what I will do if I have seizures, muscle weakness, or problems moving.

Where can I learn more?


Muscular Dystrophy Campaign ‚  
http://www.muscular-dystrophy.org/about_muscular_dystrophy/conditions/117_mitochondrial_myopathies ‚  
National Institute of Neurological Disorders and Stroke ‚  
http://www.ninds.nih.gov/disorders/mitochondrial_myopathy/mitochondrial_myopathy.htm ‚  
National Organization for Rare Disorders ‚  
http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/1156/viewAbstract ‚  

Consumer Information Use and Disclaimer


This information is not specific medical advice and does not replace information you receive from your health care provider. This is only a brief summary of general information. It does NOT include all information about conditions, illnesses, injuries, tests, procedures, treatments, therapies, discharge instructions or life-style choices that may apply to you. You must talk with your health care provider for complete information about your health and treatment options. This information should not be used to decide whether or not to accept your health care providers advice, instructions or recommendations. Only your health care provider has the knowledge and training to provide advice that is right for you. ‚  

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