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Amyotrophic Lateral Sclerosis (ALS)

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What is Amyotrophic Lateral Sclerosis (ALS)?

Amyotrophic lateral sclerosis (ALS), often called Lou Gehrig’s disease, is a fatal type of motor neuron disease that affects the motor nerve cells in the spinal cord and brain. ALS destroys the motor nerve cells that control muscles, leading to progressive weakness in otherwise healthy adults. It is one of the most devastating disorders affecting nerve and muscle function.

Currently, there is no cure for this disease. ALS is not contagious, doesn't affect the senses, and usually doesn't affect mental functioning. It most often affects people between ages 40 and 70, but it can occur at both younger and older ages. It affects people of all races and ethnic groups.

There are two main types of ALS:

  • Sporadic ALS is the most common form, making up over 90% of cases. This type occurs randomly, without any known cause or family history.
  • Familial ALS is an inherited form caused by a genetic abnormality and affects a smaller number of people.

ALS causes progressive weakness of the muscles that control the function of the head, neck, trunk, extremities, and breathing. As the disease progresses, it affects walking, talking, swallowing, breathing, and the ability to perform tasks with the arms. Some individuals also experience changes in the ability to regulate the expression of emotions. The disease is not painful. However, some individuals experience pain and discomfort due to immobility.

In addition to ALS, our multidisciplinary clinic also cares for patients with other motor neuron diseases such as:

  • Primary lateral sclerosis (PLS)
  • Progressive muscular atrophy (PMA)
  • Spinal and bulbar muscular atrophy (Kennedy Disease)

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Call (585) 275-2559

Diagnosing Amyotrophic Lateral Sclerosis (ALS)

Early diagnosis is critical to treating the disease and managing symptoms. It is essential to see your provider as soon as possible if you are showing any of the following symptoms:

  • Muscle weakness
  • Difficulty swallowing or speaking
  • Difficulty using your limbs
  • Muscle cramps or twitching 

To diagnose ALS, your provider will do detailed physical and neurologic examinations. They'll ask about your symptoms, prior medical conditions, medications, and family history.

Additional tests may include: 

  • Laboratory Tests: Blood and urine tests that evaluate for different causes of muscle weakness.
  • Electrodiagnostic Tests, such as electromyography (EMG) and nerve conduction study (NCS): Studies that measure the electrical activity of nerves and muscles to help diagnose disorders of motor and sensory nerves and muscles.
  •  Magnetic Resonance Imaging (MRI): Imaging studies that use magnets and radiowaves to evaluate structures in the body, including the nervous system, and help identify causes of weakness.
  • Pulmonary Function Testing: A study that evaluates for breathing muscle weakness.
  • Modified Barium Swallow: A study that evaluates for swallowing muscle weakness.
  • Genetic Testing: Blood or saliva test that evaluates for known genetic causes of ALS.

UR Medicine's Treatments for Amyotrophic Lateral Sclerosis (ALS)

Although there is no cure for ALS, UR Medicine provides the most comprehensive and cutting-edge care possible. Our experts are dedicated to helping you live your best life with the most advanced medical treatments available. 

Our ALS clinic incorporates a multidisciplinary approach where we bring together many care providers with a wide range of skills and knowledge in one place to address all of your needs.

We can provide care through in-person and video visits and have extensive experience connecting patients and their caregivers with local support groups and resources across the state.

We are also actively engaged in research studies evaluating new treatments for ALS, and we provide opportunities for patients interested in research to participate. Our clinic includes representatives from the major national patient advocacy groups for ALS, including the ALS Association and Muscular Dystrophy Foundation. 

Your personalized care plan may include:

  • Medications
  • Physical therapy
  • Occupational therapy
  • Speech and swallowing therapy
  • Respiratory therapy and support
  • Genetic counseling
  • Nutritional counseling and support
  • Palliative care
  • Emotional support and counseling
  • Special equipment and devices
  • Connection with local support groups and resources
  • Social worker support

Our teams’ goals are to provide you with access to the most advanced treatments, care, and support to help slow disease progression, preserve independence, function, and communication, maximize quality of life, and minimize uncomfortable symptoms and suffering.

What Sets Us Apart?

We are a leading academic medical center in neurologic care and research, and many of our providers are on the frontlines of research, actively working on cures and clinical trials of new medications. As a result, we have the expertise, dedication, and resources to provide the most advanced care and research opportunities possible.

Support the ALS Clinic

Your donation, no matter the size, brings us closer to life-changing discoveries and treatments. For someone living with a neuromuscular disorder, your support means more than just hope – it means a chance at a fuller, more independent life.

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Locations

We serve you in the Rochester metropolitan area and surrounding region.

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3 locations

Neurology - Rochester
Part of Strong Memorial Hospital

Ambulatory Care Center at Strong Memorial Hospital
601 Elmwood Avenue, 1st Floor
Rochester, NY 14642

Neuromuscular Electromyography and Nerve Conduction (EMG) Lab - Brighton

Clinton Crossings, Building C
919 Westfall Road, Suite 210
Rochester, NY 14618

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