Diagnostic delay in amyotrophic lateral sclerosis: what scope for improvement?

The average time taken from symptom onset to diagnosis in motor neuron disease is many months and has shown no sign of improving despite the introduction of riluzole therapy. We performed a retrospective analysis of the time to diagnosis in 57 patients using a structured interview with the patients and/or their carers. In this cohort, studied in England and Wales, the mean time from onset to diagnosis was 16.2 months. An initial incorrect diagnosis, refusal to consider the diagnosis when it was suggested by the informed patient, failure to consider a neurological cause for the patient's symptoms, and failure to make early referral to a neurologist were the major factors leading to delayed diagnosis. Bulbar symptoms were more likely to lead to correct diagnosis than limb-onset features. Ten of our patients made the diagnosis by consulting reference books or the Internet before they were informed of it by their physician.