Diagnosis and treatment

How ALS is diagnosed

ALS is often diagnosed by ruling out other diseases and conditions first. This is because so far, there is no test specifically to diagnose ALS. Usually, the diagnosis is made by a neurologist.

In addition to a physical examination, the usual process of diagnosing ALS includes an electromyography (EMG) test, blood tests, magnetic resonance imaging (MRI), and other tests to search for the possible presence of other diseases that exhibit symptoms similar to those of ALS.

ALS clinics and treatment centres

ALS clinics are multidisciplinary centres aimed at delivering expert care to people and families living with ALS. Clinics provide education, monitoring and timely interventions, while promoting regular communication with your family doctor and community healthcare providers. In addition, the clinics and their teams of professionals are among the community of researchers in Canada who are working to discover effective ALS treatments.

ALS treatment centres are places where people and families can receive ALS care but may or may not have multidisciplinary care and opportunities to participate in research.

Early referral to an ALS clinic can often speed up diagnosis of the disease,¹ and numerous studies have shown that patients who receive care at multidisciplinary clinics have better outcomes.^2,3

Approved treatments

For nearly 20 years, there was only one treatment available for ALS. The good news is that more recently, several new ALS treatments have become approved for use or are going through the approval process in Canada and more are being tested in clinical trials. ALS treatments currently available in Canada are:

• Riluzole (brand name Rilutek) – approved in 2000
• Edaravone (brand name Radicava)
  • Intravenous formulation – approved in 2018
  • Oral formulation – approved in 2022

Alternative treatments

A lot of information about alternative ALS treatments is available, and sometimes you may hear or read conflicting and/or incorrect information. Fortunately, help is available for people trying to understand whether claims made about alternative or “off-label” ALS therapies are legitimate (off-label means that particular use of an otherwise approved drug has not been authorized by Health Canada). Dr. Richard Bedlack, Director of the Duke University ALS Clinic in the US, is also the founder of ALSUntangled, an initiative that reviews alternative and off-label treatments, with the goal of helping people with ALS make more informed decisions.

The ALSUntangled website provides completed reviews of alternative ALS treatments and their level of evidence

_{Content adapted from the ALS Guide, which was published in 2019 as a joint project of ALS Societies across Canada.}  

¹_{Molina et al, “Early Referral to an ALS Center Reduces Several Months the Diagnostic Delay: A Multicenter-Based Study,” Frontiers in Neurology, 2020 Dec 18;11:604922. 2Paipa AJ, Povedano M, Barcelo A, Domínguez R, Saez M, Turon J, Prats E, Farrero E, Virgili N, Martínez JA, Corbella X. Survival benefit of multidisciplinary care in amyotrophic lateral sclerosis in Spain: association with noninvasive mechanical ventilation. J Multidiscip Healthc. 2019;12:465-470}

³_{Traynor BJ, Alexander M, Corr B, et al, Effect of a multidisciplinary amyotrophic lateral sclerosis (ALS) clinic on ALS survival: a population-based study, 1996–2000. Journal of Neurology, Neurosurgery & Psychiatry 2003;74:1258-1261.}