Motor neurone disease (MND): symptoms, causes, types and treatment

The NHS says symptoms you may have at first include:

• Stiff or weak hands, with problems holding or gripping things.

• Weak legs and feet: finding stairs difficult, tripping a lot, or finding it hard to lift or move your foot (foot drop).

• Twitches, spasms or muscle cramps, where muscles painfully tighten.

The NHS says that as MND gets worse, you may have problems breathing, swallowing and speaking, produce a lot of saliva (drool), have changes in mood and personality, and be unable to walk or move.

It stresses that symptoms affect everyone differently, you may not get all of them, and how quickly they get worse varies from person to person.

NICE adds that MND may present first with speech or swallowing problems or tongue fasciculations (bulbar presentation), or with breathing problems such as breathlessness on exertion, daytime sleepiness, early morning headache or breathlessness lying down. It says MND may first present with cognitive features such as behavioural changes, emotional lability or frontotemporal dementia.

The NHS says early symptoms such as twitches and muscle weakness can be similar to other, less serious conditions, but it is important to get them checked by a GP. See a GP if you have difficulty holding or gripping objects, weakness in your legs or feet, or twitches or muscle cramps that keep happening, last a long time or do not go away.

For sudden severe breathlessness or difficulty breathing, call 999.

The NHS says MND affects nerves in your brain and spinal cord called motor neurones, which tell your muscles what to do. If you have MND, your motor neurones stop working properly. It is usually life-shortening and there is currently no cure, but treatment can help manage the symptoms.

The NHS says MND gets worse over several months or years, and how quickly varies from one person to another. It can affect mobility and movement, speech and communication, breathing, swallowing, eating and drinking, emotions and thinking, and relationships and family.

The NHS says there are 4 main types, each affecting different parts of the body, particularly in the early stages. ALS is the most common.

The NHS says it is not clear why the motor neurones stop working properly, but for most people it is thought that a combination of certain genes and other factors is involved.

About 1 in 10 people with MND have a family history of the condition, according to the NHS. If someone in your family has MND it does not necessarily mean you will also get it.

The NHS says that if a GP thinks you might have MND, they may refer you to a neurologist for assessment and tests. Tests used to help diagnose MND include blood tests, tests to check how well your nerves are working, and an MRI scan to help rule out other conditions that affect the brain and nerves.

It says MND can be difficult to diagnose in the early stages, but as symptoms get worse it can usually be confirmed.

NICE says that if MND is suspected, the person should be referred without delay and given a single point of contact for the specialist MND team, with a follow-up appointment within 4 weeks of diagnosis.

The NHS says there is currently no cure but there are treatments that can ease symptoms and help you have the best quality of life possible. The treatment depends on your symptoms and type of MND, and you will probably need different treatments over time.

Medicines may help ease symptoms such as muscle stiffness or cramps, drooling and breathlessness. The NHS says riluzole can help slow down progression if you have ALS, and NICE recommends riluzole as an option for ALS.

The NHS says a team of healthcare professionals will give you support, which may include a specialist nurse, a neurologist, a physiotherapist and an occupational therapist. It says you should have an appointment with your care team every 2 or 3 months.

NICE says coordinated care should come from a clinic-based specialist MND multidisciplinary team, and that people should be offered the chance to discuss preferences and concerns about care at the end of life at key points, including at diagnosis. NICE also lists notifying the DVLA among information to be given at diagnosis.

The NHS says MND can be difficult to live with, both physically and emotionally, and suggests support groups. It names the Motor Neurone Disease Association and the Brain and Spine Foundation as organisations offering information and support to anyone affected, including family, friends and carers.

On the NHS the route is usually GP, then a neurologist, then a specialist MND team. NICE recommends a coordinated specialist multidisciplinary approach. Private neurology opinions are available; make sure the findings are shared with your NHS team so care stays joined up.