The diagnostic process in ALS

A diagnosis of amyotrophic lateral sclerosis (ALS) is made by a process of elimination of other possible diseases. The time that elapses between the appearance of the first symptoms and diagnosis of ALS may be long, and may mean that the patient is passed from one specialist to another, or that the disease is misdiagnosed and treated incorrectly. It is likely that this period varies enormously in different countries, cultures and medical systems. An international survey was initiated to try and understand the relevant steps on the pathway to diagnosis of ALS, and to evaluate potential culture differences in this process. A pilot study was carried out in Germany, Spain and Sweden to evaluate the feasibility of the methodology. The pilot study showed that: (i) in most cases there was a long time lapse between the appearance of the patient's initial symptoms and their first visit to a general practitioner; (ii) there was often a long time lapse between the patient visiting a general practitioner and a neurologist; (iii) diagnosis was always made by a neurologist; and (iv) the time that elapsed before the neurologist announced the diagnosis to the patient differed from country to country. Education of general practitioners and other specialists about ALS is imperative. A follow-up study is now planned in various European countries and the USA to investigate whether similar results are found worldwide.