Conditions & Treatments

Amyotrophic Lateral Sclerosis (ALS)

Amyotrophic lateral sclerosis (ALS) is a terminal neurological disorder characterized by progressive degeneration of nerve cells in the spinal cord and brain.

Amyotrophic Lateral Sclerosis (ALS)

What is ALS?

Illustration of amyotrophic lateral sclerosis
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Amyotrophic lateral sclerosis is a terminal neurological disorder characterized by progressive degeneration of nerve cells in the spinal cord and brain. Often referred to as Lou Gehrig's disease (a famous baseball player who died from the disease), it is one of the most devastating of the disorders that affects the function of nerves and muscles.

ALS does not affect mental functioning or the senses (such as seeing or hearing), and it is not contagious. Currently, there is no cure for amyotrophic lateral sclerosis.

How common is ALS?

According to the ALS Association, the following statistics currently apply to ALS:

  • Most people who develop ALS are between the ages of 40 and 70, although the disease can occur at a younger age.

  • The average age for the onset of ALS is 55.

  • ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.

  • ALS affects as many as 30,000 Americans with 5,000 new cases diagnosed in the U.S. each year.

What are the different types of ALS?

There are three known classifications of ALS, including the following:

  • Sporadic. The most common form of ALS in the U.S., involving 90 to 95 percent of all cases. These cases occur randomly, without any known cause, and there is no association with persons in the family with the disease.

  • Familial. Suggests that the disease is inherited and accounts for a very small number of cases in the United States, about 5 to 10 percent.

  • Guamanian. An extremely high incidence of ALS was observed in Guam and the Trust Territories of the Pacific in the 1950s.

What are the symptoms of ALS?

Patients who suffer from ALS initially experience weakness in one of their limbs that develops over a matter of days or, more commonly, a few weeks. Then, several weeks to months later, weakness develops in another limb. Sometimes the initial problem can be one of slurred speech or difficulty swallowing.

As ALS progresses, though, more and more symptoms are noticed. The following are the most common symptoms of ALS. However, each individual may experience symptoms differently. Symptoms may include:

  • Twitching and cramping of muscles, especially those in the hands and feet

  • Loss of motor control in the hands and arms

  • Impairment in the use of the arms and legs

  • Tripping and falling

  • Dropping things

  • Persistent fatigue

  • Uncontrollable periods of laughing or crying

  • Slurred or thick speech and difficulty in projecting the voice

As the disease progresses, symptoms may include:

  • Difficulty breathing

  • Difficulty swallowing

  • Paralysis

The symptoms of ALS may resemble other conditions or medical problems. Always consult your doctor for a diagnosis.

How is ALS diagnosed?

In addition to a complete medical history and physical examination, diagnostic procedures for ALS may include the following:

  • Laboratory tests (including blood and urine studies and thyroid functioning tests)

  • Muscle and/or nerve biopsy. A procedure performed to remove tissue or cells from the body for examination under a microscope

  • Spinal tap (also called a lumbar puncture). A special needle is placed into the lower back, into the spinal canal; This is the area around the spinal cord; The pressure in the spinal canal and brain can then be measured. A small amount of cerebral spinal fluid (CSF) can be removed and sent for testing to determine if there is an infection or other problems. CSF is the fluid that bathes the brain and spinal cord.

  • X-ray. A diagnostic test which uses invisible electromagnetic energy beams to produce images of internal tissues, bones, and organs onto film

  • Magnetic resonance imaging (MRI). A diagnostic procedure that uses a combination of large magnets, radiofrequencies, and a computer to produce detailed images of organs and structures within the body

  • Electrodiagnostic tests, such as electromyography (EMG) and nerve conduction study (NCS). Studies that evaluate and diagnose disorders of the muscles and motor neurons. Electrodes are inserted into the muscle, or placed on the skin overlying a muscle or muscle group, and electrical activity and muscle response are recorded.

What is the treatment for ALS?

Specific treatment for ALS will be determined by your doctor based on:

  • Your age, overall health, and medical history

  • Extent of the disease

  • Your tolerance for specific medications, procedures, or therapies

  • Expectations for the course of the disease

  • Your opinion or preference

For most people with ALS, primary treatment may involve the management of symptoms, and may include physical, occupational, speech, respiratory, and nutritional therapies. Some medications and/or heat or whirlpool therapy may help to relieve muscle cramping. Exercise, although recommended in moderation, may help to maintain muscle strength and function.

There is no proven treatment for ALS. However, the FDA approved Rilutek, the first drug that has prolonged the survival of persons with ALS.

Managing the symptoms of ALS is a process that may be challenging for people with the condition, their caregivers, and the medical team. However, it is important to know that there are many community resources available for support and assistance.

Researchers are conducting studies to increase their understanding of genes that may cause the disease, mechanisms that can trigger motor neurons to degenerate in ALS, and approaches to stop the progress leading to cell death.

Treatment Programs


Massachusetts General Hospital understands that a variety of factors influence patients' health care decisions. That's just one reason why we're dedicated to ensuring patients understand their diagnosis and treatment options. Because a single option might not serve all patients, we offer a wide range of coordinated treatments and related services across the hospital. Patients should consult with their primary care doctor or other qualified health care provider for medical advice and diagnosis information.

Select a treatment program for more information:



Imaging

  • Neuroendovascular Program
    Working as part of the Vascular Center, the interventional specialists of the Neuroendovascular Program perform minimally invasive, image-guided treatments for conditions including stroke and cerebral aneurysm. These same interventionalists also use minimally invasive techniques to treat non-vascular conditions including herniated disc and vertebral fractures. In addition, our specialty-trained radiologists use the latest imaging technologies to provide diagnostic exams for a full range of neurological conditions.
MassGeneral Hospital for Children

  • Psychology Assessment Center
    The pediatric neuropsychology specialists at Massachusetts General Hospital’s Psychology Assessment Center provide neuropsychological assessments to aid in the diagnosis and treatment of neurological, medical, genetic and developmental disorders.

Turning thoughts into action

Dr. Leigh Hochberg from the Department of Neurology at Massachusetts General Hospital is using neurotechnology to harness brain signals that accompany movement. The ultimate goal of the work is to "turn thought into action," with the hope of one day assisting people with ALS, spinal cord injury and stroke to regain control over their environment.

Testing new drugs for ALS

Merit Cudkowicz, MD, director of the Mass General Neurological Clinical Research Institute, talks about clinical trials for Amyotrophic Lateral Sclerosis, also known as ALS, or Lou Gehrig's disease.

Improving access to highly specialized care using state-of-the-art telemedicine

Maine Collaborative teams up with Massachusetts General Hospital for better care of patients with Lou Gehrig’s Disease.

Calling all Veterans

Military Veterans who are diagnosed with ALS are eligible for service connected benefits.

ALS Trial Expert Available to Answer Questions about Clinical Trials

NEALS and ALSA launch new "clinical trial expert" effort to help people with ALS navigate the world of clinical research.

Knopp Announces Positive Phase II Results

Phase II Dexpramipexole, funded by Knopp Biosciences, shown to be safe and tolerable in patients with ALS.

Ceftriaxone, NP001, and Dexpramipexole Trials Close Enrollment

The phase III trial of Ceftriaxone; Neuraltus, the Phase II study of NP001 in ALS; and EMPOWER, the Phase III study of Dexpramipexole in ALS, are no longer recruiting participants.

Trophos Phase III Trial Results Announced

Trophos, a French pharmaceutical company, announced results from its phase III trial of Olesoxime.

Veterans with ALS - New Disability Rating Rule

As of January 19th, 2012, veterans with service connected ALS will be eligible for a 100% disability rating.

The Northeast ALS Consortium (NEALS) Launches New Website

The Northeast ALS Consortium (NEALS) has launched their new website devoted to supporting clinical research of Amyotrophic Lateral Sclerosis (ALS) and other motor neuron disease (MND).

Phytopharm Releases Positive Preliminary Results

Phytopharm lead drug candidate Cogane has demonstrated efficacy in genetic preclinical model of ALS.

Press Release: Brainstorm Initial Patient Results Support NurOwn Safety

Press release states no significant side effects noted in initial Brainstorm participants.

Phase II TDI 132 Trial Announced

The ALS Therapy Development Institute (ALS TDI) has announced they will launch a Phase II clinical trial investigating TDI 132 as a potential treatment for ALS.

ALS TDI To Hold TDI132 Information Webinar on March 12th

The webinar will provide an overview of the scientific rationale for this exciting planned trial as well as discuss the next steps forward.

Mass General/ Project A.L.S. Internship Program

The Mass General / Project A.L.S. Internship Program at Massachusetts General Hospital in Boston offers students an exceptional opportunity to gain first-hand experience in the clinical research and care of ALS.

Stem Cell Study Aids Quest for ALS Therapies

An international research team has created motor neurons using skin cells from a person with an inherited form of ALS/MND.

NeuralStem Trial: Safety Results of First Twelve Participants Published

Published safety data shows that spinal cord stem cells can be delivered safely into the spines of patients with ALS.

Confirmatory Data Supports Effectiveness of Cogane™ in ALS

Cogane™ reduced the loss of spinal cord motor neurons by 39% in a pre-clinical model with a mutation of the SOD1 gene.

Cytokinetics Announces Fast Track Designation

The FDA has granted Cytokinetic's drug candidate CK-2017357 a fast track designation for the potential treatment of ALS.

A Powerful New Clinical Research Resource: PRO-ACT Database

The Northeast ALS Consortium (NEALS) and Prize4Life are developing the PRO-ACT Platform, an ALS clinical trial record database comprised of data collected from Phase II and III trials conducted over the past 20 years.

Results Announced for Phase I Trial of ISIS 333611 in SOD1 FALS

Results indicate that ISIS 333611 was well-tolerated.

Cytokinetics Announces Results of Phase II Trial of CK-2017357

Published results demonstrated that single oral doses of 250 mg and 500 mg of CK-2017357 appeared safe and well-tolerated in patients with ALS.

US Brainstorm Trial Statement

Formal statement on the forthcoming US Brainstorm trial

New Mass General Center to Help Speed Development of Neurological Treatments

Mass General received a $20 million grant to establish a nationwide clinical coordinating center for testing drugs that can help people with diseases of the brain such as Alzheimer’s disease.

Statement on the Clinical Trial of Ceftriaxone

The DSMB for the NINDS-sponsored clinical trial of ceftriaxone in ALS recommended that based on existing data the trial be stopped because the study was unlikely to reach the pre-determined efficacy criteria.

NeuRx Diaphragm Pacing System (DPS) Study has been Funded

This study will assess the ability of the NeuRx Diaphragm Pacing System (DPS) to improve respiratory function and quality of life in people with ALS.

Cytokinetics Proceeding to Initiate Phase IIb Trial

Cytokinetics plans to initiate this clinical trial, designed to evaluate the safety, tolerability and efficacy of tirasemtiv (formerly CK-2017357) in patients with ALS, in the fourth quarter of 2012.

Cytokinetics Announces BENEFIT-ALS, A Phase IIb Clinical Trial of Tirasemtiv

BENEFIT-ALS Will Evaluate Longer Term Effects of Novel Skeletal Muscle Activator and Represents a Key Step Forward Towards Potential Registration

Neuraltus Announces Encouraging Phase II Study Results

Neuraltus Pharmaceuticals, Inc. has announced results from its phase II clinical study of NP001 in patients with ALS. Results demonstrated that NP001 was safe and well-tolerated.

Merit Cudkowicz to Hold Informational Webinar on the ALS Clinical Trial Pipeline

On Friday November 30th 2012, Merit Cudkowicz, MD, MSc, gave a webinar presentation for patients and their families. The archived webinar is now available for viewing.

Mass General/ Project A.L.S. Internship Program 2013

The Mass General / Project A.L.S. Internship Program at Massachusetts General Hospital in Boston offers students an exceptional opportunity to gain first-hand experience in the clinical research and care of ALS.

Mass General Hospital ALS Internship Program for College and Medical School Students 2013

The Mass General Hospital ALS Internship Program offers both college and medical school students an exceptional opportunity to gain first-hand experience in the clinical research and care of ALS.

Massachusetts General Hospital Announces Neurological Clinical Research Institute

The Department of Neurology at Massachusetts General Hospital is pleased to announce that the Neurology Clinical Trials Unit has changed its name to the Neurological Clinical Research Institute (NCRI).

PRO-ACT: The Largest ALS Clinical Trials Database Ever Created

Open-access database will take researchers one step closer to finding a treatment and cure for ALS

Webinar for ALS Patients and Families on Mexiletine in Sporadic ALS

Join us on Friday January 11th 2013 as Dr. Michael Weiss (University of Washington) will provide study rationale and background for Mexiletine in patients with sporadic ALS. He will also be available for Q&A.

Biogen Announces It Will Discontinue Development of Dexpramipexole Based on Phase 3 Trial Results

Biogen Idec has announced that the EMPOWER trial has failed to demonstrate efficacy in primary and secondary endpoints.

Biogen Announces It Will Discontinue Development of Dexpramipexole Based on Phase 3 Trial Results

Biogen Idec has announced that the EMPOWER trial has failed to demonstrate efficacy in primary and secondary endpoints.

Massachusetts General Hospital Researcher Receives Award for ALS Research

James D. Berry, MD, MPH has received the Richard Olney, MD, Clinician-Scientist Development Award for his investigation of cells in the immune system.

Phase II Clinical development of novel, high-potential treatments for people with ALS RFP

The Massachusetts General Hospital Neurological Clinical Research Institute (NCRI) and The ALS Assocation announce a call for Phase II clinical trial applications for novel, high potential treatments for ALS.

The Clinical Trial of Ceftriaxone in ALS

A webinar recording explaining the design and scientific rationale behind the Clinical Trial of Ceftriaxone in Amyotrophic Lateral Sclerosis (ALS), commonly known as Lou Gehrig's disease.

Ceftriaxone Trial Video

A video explaining the design and scientific rationale behind the Clinical Trial of Ceftriaxone in Amyotrophic Lateral Sclerosis (ALS), commonly known as Lou Gehrig's disease.

Neurology Bicentennial Celebration, 2011 Part II

Neurology Bicentennial Celebration, October 13, 2011. Clinical and research presentations on ALS, Stroke, Alzheimer’s Disease, and Parkinson’s Disease

Respiratory Assistance Video

A video for ALS patients discussing and demonstrating uses of bipap and cough assist machines.

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