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 a ppearance of the first symptoms and diagnosis of ALS may be long, and may m ean that the patient is passed from one specialist to another, or that the disease is misdiagnosed and treated incorrectly. It is likely that this per iod varies enormously in different countries, cultures and medical systems. An international survey was initiated to try and understand the relevant s teps on the pathway to diagnosis of ALS, and to evaluate potential culture differences in this process. A pilot study was carried out in Germany, Spai n and Sweden to evaluate the feasibility of the methodology. The pilot stud y showed that: (i) in most cases there was a long time lapse between the ap pearance of the patient's initial symptoms and their first visit to a gener al practitioner; (ii) there was often a long time lapse between the patient visiting a general practitioner and a neurologist; (iii) diagnosis was alw ays made by a neurologist; and (iv) the time that elapsed before the neurol ogist announced the diagnosis to the patient differed from country to count ry. Education of general practitioners and other specialists about ALS is i mperative. A follow-up study is now planned in various European countries a nd the USA to investigate whether similar results are found worldwide. (C) 1999 published by Elsevier Science B.V. All rights reserved.