This table lists symptoms that people with this disease may have. For most diseases, symptoms will vary from person to person. People with the same disease may not have all the symptoms listed. This information comes from a database called the Human Phenotype Ontology (HPO) . The HPO collects information on symptoms that have been described in medical resources. The HPO is updated regularly. Use the HPO ID to access more in-depth information about a symptom.
|Medical Terms||Other Names||
|100% of people have these symptoms|
|Amyotrophic lateral sclerosis||0007354|
|80%-99% of people have these symptoms|
|Generalized muscle weakness||0003324|
|30%-79% of people have these symptoms|
Excessive, persistent worry and fear
|Fatigable weakness of respiratory muscles||0030196|
|Fatigable weakness of swallowing muscles||0030195|
Tiredness[ more ]
Inability to move
|Skeletal muscle atrophy||
Muscle wasting[ more ]
Involuntary muscle stiffness, contraction, or spasm
Dry mouth syndrome
Reduced salivation[ more ]
|5%-29% of people have these symptoms|
|Nausea and vomiting||0002017|
|Percent of people who have these symptoms is not available through HPO|
|Degeneration of anterior horn
|Degeneration of the lateral corticospinal tracts||0002314|
You can find laboratories offering clinical and research genetic testing for ALS through the Genetic Testing Registry (GTR). The intended audience for the GTR is health care providers and researchers. Patients and consumers with specific questions about a genetic test should contact a health care provider or a genetics professional.
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If you need medical advice, you can look for doctors or other healthcare professionals who have experience with this disease. You may find these specialists through advocacy organizations, clinical trials, or articles published in medical journals. You may also want to contact a university or tertiary medical center in your area, because these centers tend to see more complex cases and have the latest technology and treatments.
If you can’t find a specialist in your local area, try contacting national or international specialists. They may be able to refer you to someone they know through conferences or research efforts. Some specialists may be willing to consult with you or your local doctors over the phone or by email if you can't travel to them for care.
You can find more tips in our guide, How to Find a Disease Specialist. We also encourage you to explore the rest of this page to find resources that can help you find specialists.
Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.
Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
Living with a genetic or rare disease can impact the daily lives of patients and families. These resources can help families navigate various aspects of living with a rare disease.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
CRISPR Finds Genetic Suspects Behind ALS/FTD
March 13, 2018
FDA Patient Representative Program
January 11, 2017
ALS Clinical Trials Guidelines February 2016
Location: Warrenton, VA
Description: Specific Aims: 1. To finalize the formation of an Organizing Committee and Advisory Board of international ALS physician and physician-scientist volunteers to develop and organize an international meeting that will update the present ALS clinical trial guidelines; 2. To hold an international conference o review the issues and current status of clinical trials; 3. To discuss and develop guidelines for ALS RCTs; and 4.To publish the guidelines in major neurology journals and promote implementation of these guidelines into future ALS trials.
Contact: Robin Conwit, (301) 496-9135,email@example.com
Co-funding Institute(s): National Institute of Neurological Disorders and Stroke, Office of Rare Diseases Research
Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question
What are the chances of passing on sporadic ALS to offspring? Are there cases where a sporadic case became the first of an autosomal dominant inheritance? See answer
Does a father who develops ALS in his late forties have an increased risk for his son or future generations to have ALS? See answer
Is there any proof that a special diet helps slow down the progression of ALS? Are there any impending cures? Is it true that riluzole is most effective for patients with bulbar-onset? See answer