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Motor neurone disease: assessment and management

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Last updated:22nd Jul 2019
Motor neurone disease: assessment and management - National Institute for Health and Care Excellence (NICE)

This guideline covers assessing and managing motor neurone disease (MND). It aims to improve care from the time of diagnosis, and covers information and support, organisation of care, managing symptoms and preparing for end of life care.

- MHRA advice on gabapentin: In July 2019 we added a footnote to this guideline to reflect a change in the law relating to gabapentin. As of 1 April 2019, because of a risk of abuse and dependence gabapentin is controlled under the Misuse of Drugs Act 1971 as a class C substance and is scheduled under the Misuse of Drugs Regulations 2001 as schedule 3.
Motor neurone disease (MND) is a neurodegenerative condition that affects the brain and spinal cord. MND is characterised by the degeneration of primarily motor neurones, leading to muscle weakness.

The presentation of the disease varies and can be as muscle weakness, wasting, cramps and stiffness of arms and/or legs; problems with speech and/or swallowing or, more rarely, with breathing problems. As the disease progresses, the pattern of symptoms and signs becomes similar, with increasing muscle weakness in the person's arms and legs, problems swallowing and communicating and weakness of the muscles used for breathing, which ultimately leads to death. Most people die within 2–3 years of developing symptoms, but 25% are alive at 5 years and 5–10% at 10 years. The most common type of MND is amyotrophic lateral sclerosis (ALS). There are rarer forms of MND such as progressive muscular atrophy or primary lateral sclerosis, which may have a slower rate of progression.

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