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Prolonged survival in motor neuron disease: a descriptive study of the King’s database 1990–2002

Abstract

Motor neuron disease is a clinically heterogeneous disease with significant differences in survival. The authors have characterised a subset of long term survivors seen in a tertiary clinic over a 12 year period in terms of clinical variables and demographics, comparing them with short term survivors and the remaining population. Thirty of 769 patients survived more than 10 years, corresponding to 4% of the total population. Significantly younger onset of disease symptoms and a predominance of pure upper motor neuron signs at presentation characterised the long term survivors, but factors traditionally regarded as being associated with poor prognosis were also well represented. For a few people with motor neuron disease there remains the hope, whatever the initial presentation, that their subsequent survival will be longer than expected.

  • amyotrophic lateral sclerosis
  • database
  • motor neurone disease
  • MND, motor neuron disease
  • ALS, amyotrophic lateral sclerosis
  • PLS, primary lateral sclerosis
  • FVC, forced vital capacity

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