NEUROMUSCULAR DISEASE RESOURCES

When you inhale, oxygen is delivered through the blood stream to the rest of your body.  When you exhale, your respiratory system removes carbon dioxide from your blood and releases it into the air.   Maintaining this gas exchange between oxygen and carbon dioxide is crucial or else respiratory failure can result.

Various neuromuscular diseases can weaken the muscles that control inhaling and exhaling.   The result can be insufficient gas exchange, causing carbon dioxide levels to increase in the system, leading to respiratory failure.

Signs and Symptoms Include:

  • Shortness of breath
  • Difficulty breathing while laying flat
  • Rapid shallow breathing
  • Increasing generalized weakness
  • Feeling of breathlessness
  • Choking
  • Insomnia
  • Excessive sleepiness during the day
  • Morning headaches
  • Fatigue
  • Impaired cognition
  • Inability to cough effectively

Diagnostic Testing:

If you are having any of these signs or symptoms, your doctor may order testing to determine which treatment options are needed:

  • Pulmonary Function Tests (PFT): measures how well the lungs take in and release air and move oxygen into the body’s circulation. This test may be repeated up to several time a year.
  • Arterial Blood Gases (ABG): measures the levels of oxygen and carbon dioxide in the blood to determine how well your lungs are working.
  • Pulse Oximetry: a non-invasive method for monitoring oxygen saturation, usually done overnight and with a device placed on your finger.
  • X-rays: show any lung abnormalities, infections (pneumonias), etc.

Online Resources:

All Neuromuscular diseases:

http://www.mda.org/content/assisted-ventilation-test

http://www.mda.org/disease

http://rarediseases.org/

ALS:

http://www.alsa.org/als-care/resources/publications-videos/videos/respiratory-video-series.html

http://www.alsa.org/

Congenital Muscular Dystrophy:

http://curecmd.org/resources

Myasthenia Gravis:

http://www.myasthenia.org/

Philips Webinars for Neuromuscular Disease:

Webinar 1

Webinar 2

 Trials:

ALS: click here