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Amyotrophic Lateral Sclerosis (ALS)

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Amyotrophic lateral sclerosis (ALS) is a life-ending neurological disorder that causes progressive degeneration (breakdown) of nerve cells in the spinal cord and brain. Often called "Lou Gehrig's disease," named after the famous baseball player who passed away from the disease, it’s a devastating illness that affects the way your muscles and nerves function.

ALS doesn’t affect mental functioning or your ability to see or hear, and it’s not contagious. Most people who develop the condition are between 40 and 70 years old, though it can occur at a younger age. ALS affects as many as 30,000 people in the United States, with 5,600 new cases diagnosed each year. Currently, there’s no cure for ALS.

There are three different types of ALS:

  • Sporadic ALS: The most common form of ALS in the U.S., representing about 90 to 95 percent of all cases. It occurs randomly, without any known cause, and this form of the disease doesn’t run in families.
  • Familial ALS: A rare, inherited form of the disease that accounts for fewer than 10 percent of all cases in the U.S.
  • Guamanian ALS: A form of the disease that was observed in Guam and the Trust Territories of the Pacific in the 1950s.

Symptoms of ALS vary from person to person, and can include:

  • Lack of coordination or muscle control in your hands, arms, and legs, which may cause you to drop things or trip and fall frequently
  • Persistent fatigue
  • Slurred or thick speech and difficulty projecting your voice
  • Twitching and cramping of muscles, especially in your hands and feet
  • Uncontrollable periods of laughing or crying

As the disease progresses, more serious symptoms may include:

  • Difficulty breathing or swallowing
  • Paralysis

Tests

Laboratory Tests
Your doctor uses lab tests to confirm if you have ALS, including blood and urine studies, and thyroid function tests.

Muscle or Nerve Biopsy
During this procedure, your doctor takes a sample of tissues (either using a minimally invasive procedure or a needle) that will be examined under a microscope.

Spinal Tap (Lumbar Puncture)
In this test, your doctor inserts a needle into your spinal canal (the area around your spinal cord) to get a sample of your cerebral spinal fluid, which surrounds your brain and spine. The fluid is sent to the lab to testing check for an infection or other problems. A lumbar puncture also allows your doctor to measure the pressure in your spinal fluid.

X-ray
This test uses electromagnetic energy beams to create pictures of your internal tissues, bones, and organs.

Magnetic Resonance Imaging (MRI)
An MRI scan uses a combination of large magnets, radio waves, and a computer to produce detailed images of your organs and other structures inside your body.

Electrodiagnostic Tests
These studies allow your doctor to evaluate your muscles and nerves that control them (motor neurons) by measuring electrical activity.

  • Electromyography (EMG) involves a technician inserting electrodes into your muscle, and a specialized computer recording electrical activity and muscle response.
  • In nerve conduction velocity (NCV), a technician places electrodes on the skin overlying a muscle or muscle group, and a specialized computer records electrical activity and muscle response.

Treatments

Therapy
For most people with ALS, the primary treatment is to manage your symptoms. Your doctor may include physical, occupational, speech, respiratory, and nutrition therapies as part of your treatment.

Medications
Your doctor may prescribe medicines to help relieve any muscle cramping related to ALS. There’s no proven treatment for ALS, but the U.S. Food and Drug Administration (FDA) approved Rilutek® — the first drug to extend the life of people with ALS.

Heat or Whirlpool Therapy
Your doctor may recommend heat or whirlpool therapy to help relieve muscle cramps.

Exercise
Exercise, although recommended in moderation, may help maintain your muscle strength and function.

Why Choose UHealth?

A dedicated ALS research program. The ALS Center at the University of Miami offers research which is the only path towards finding an effective treatment or even a cure for ALS, which for now, remains an incurable and invariably fatal disease.

World-class care in an academic health center. As a research and teaching institution, we treat children and adults with proven, leading-edge procedures based on clinical studies performed at the Miller School of Medicine. Our doctors, residents, nurses, and therapists work together to improve health care.

A multi-disciplinary approach.The support of a team of connected specialists provides patients and families with exceptional peace of mind and an informed understanding. Interconnected services greatly improve the continuum of care along the patient's journey.

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