'Its the progression, doctor: what patients with motor neurone disease really are interested in

To see a patient and recognise amyotrophic lateral sclerosis as the underlying cause of progressive, painless paralysis without sensory symptoms has been deemed easy, and indeed it is for physicians seeing patients with motor neuron disease on a regular basis. Answering patients’ questions of ‘How bad is it? What will happen to me? How long do I have?’ is however no mean feat; these questions invariably challenge the treating physician to perform a thorough assessment of the extent and the aggressiveness of the disease. While the Amyotrophic lateral sclerosisfunctional rating scale (ALSFRS-R) provides a quantitative measure of functional deficits, it does not follow a linear time course and has limited predictive capability compared to vital capacity.1 The individual causal mechanisms underlying ALS are largely unknown. Despite rapid advances associating more than 60 genes with ALS, few of these predict progression.2 Only recently, phosphorylyated neurofilament heavy...
Source: Journal of Neurology, Neurosurgery and Psychiatry - Category: Neurosurgery Authors: Tags: Open access Neurodegenerative Source Type: research