Motor neurone disease (MND)

Amyotrophic lateral sclerosis (ALS) is the most common form of MND.

MND happens when specialist nerve cells in the brain and spinal cord, called motor neurones, stop working properly and die prematurely. This is known as neurodegeneration.

Motor neurones control muscle activity like:

gripping walking speaking swallowing breathing

As MND progresses, it can become more difficult to do some or all of these activities.


MND happens when specialist nerve cells in the brain and spinal cord, called motor neurones, stop working properly and die prematurely. This is known as neurodegeneration.

Motor neurones control muscle activity like:

gripping walking speaking swallowing breathing

As MND progresses, it can become more difficult to do some or all of these activities.


Motor neurones control muscle activity like:

gripping walking speaking swallowing breathing

As MND progresses, it can become more difficult to do some or all of these activities.

Symptoms

The symptoms of MND start gradually over weeks and months. They tend to appear on one side of the body first and get progressively worse.

Speak to your GP if: you have early symptoms of MND Being referred to a specialist as early as possible can help you access the right support.

There are usually 3 stages of symptoms.

Early symptoms

Sometimes the early symptoms are mistaken for similar conditions that also affect the nervous system.

Limb-onset disease In about two-thirds of people with MND, the first symptoms are in the arm or leg. This is sometimes called limb-onset disease. The symptoms include: a weakened grip, which can cause problems picking up or holding objects weakness at the shoulder, making lifting your arm above your head difficult tripping up over your foot because of weakness at your ankle or hip These symptoms are usually painless. You might also experience widespread twitching of the muscles (fasciculations) or muscle cramps. You might also see wasting of the muscles with significant weight loss.

Bulbar-onset disease In 1 out of 4 cases, the first MND symptoms will affect the muscles used for speaking and swallowing. These problems might initially affect the muscles used for speech and swallowing. Increasingly slurred speech (dysarthria) is usually the first sign of this type of MND. It might be misdiagnosed as a stroke. As the condition progresses, it may become increasingly difficult to swallow (dysphagia). This might be misdiagnosed as a blockage in the throat.

Respiratory-onset disease In rare cases, MND starts by affecting the lungs, rather than affecting them at the end of the condition. This is called respiratory-onset disease. In some cases the initial symptoms like breathing difficulties and shortness of breath are more obvious. You might suffer from a lack of sleep and a headache in the morning. This might be because your body isn’t getting rid of the carbon dioxide you normally breathe out.

Advanced symptoms

As MND becomes more advanced, more parts and functions of the body are affected. This can make you more likely to experience infections, like chest infections, which can cause your condition to get worse quicker.

Muscular symptoms The limbs will become weaker. The muscles in the limbs may become thinner. As a result, the person will find it increasingly difficult to move the affected limbs. The limbs may also become stiff. This is known as spasticity. Both muscle wasting and stiffness can also cause joint aches and pains.

Speaking and swallowing difficulties Speaking and swallowing can become increasingly difficult as MND progresses. Choking episodes can be distressing but they aren’t usually the cause of death.

Saliva problems Reduced swallowing can cause excess saliva. This can cause drooling. Thicker saliva can sometimes be difficult to clear from the chest or throat. This is because the muscles that control coughing become weak.

Excessive yawning Some people with MND have episodes of uncontrollable excessive yawning. This can happen even when they’re not tired. It can sometimes cause jaw pain.

Emotional changes MND can cause changes in your ability to control your emotions. This is more likely when there’s weakness in the muscles that control speech and swallowing. One of the most common signs is when a person has episodes of sudden uncontrollable crying or, more rarely, laughter. This is sometimes called emotional lability or emotionality.

Changes to mental abilities Sometimes, people with MND have significant difficulties with: concentration planning communication behavioural changes. This is where the condition is causing a type of dementia (usually frontotemporal dementia). Up to 15% of people with MND develop more profound frontotemporal dementia. This usually happens soon after, or sometimes before, their first muscle-related symptoms. Someone with MND might not be aware that there are problems with their behaviour or personality.

Breathing difficulties Breathing might become less efficient as the nerves and muscles that help control the lungs become more damaged. This might mean you feel short of breath after doing every day tasks like walking up the stairs. Over time, you might become even more out of breath when you’re resting. Shortness of breath can become a problem at night. Some people find it difficult to breathe when they’re lying down. Others might wake in the night because they feel breathless. As breathlessness increases, breathing support can help reduce this symptom. This is usually given by non-invasive ventilatory (NIV) support. It can be useful at night to improve your sleep quality. This can help reduce drowsiness during the day.

End-stage symptoms

As MND progresses to its final phase, you might experience:

increasing body paralysis, which means you’ll need help with most daily activities significant shortness of breath

Eventually, non-invasive breathing assistance won’t be enough to make up for the loss of normal lung function. At this stage, more medication can help to reduce symptoms of breathlessness and anxiety related to it. Most people with MND become increasingly drowsy before falling into a deep sleep, where they usually die peacefully.

Secondary symptoms

Some people with MND have other symptoms that aren’t directly caused by the condition, but are related to the stress of living with it. These might include depression, insomnia and anxiety.