The internet for self-diagnosis and prognostication in ALS

Abstract

Persons with ALS, and those close to them, may use the internet to explore symptoms prior to formal diagnosis, and as a source of information about prognosis and treatment thereafter. We used an internet search engine to rank the sensitivity of a variety of symptom search terms a patient might use for the diagnosis of ALS/MND. We also studied search engine responses to questions about life expectancy and possible 'cure'. An internet search engine in relation to ALS currently lacks sensitivity, and results varied greatly with only minor differences in the search terms used. The prognostic information did not reflect the inherent heterogeneity. Results in relation to 'cure' were misleading and may promulgate false hopes. There is a need to guide those with ALS (and particularly their children) to sources of reliable web-based information in addition to open discussion.