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Motor neurone disease

Motor neurone disease (MND) is the name given to a group of rare diseases that affect nerve cells in your brain and spinal cord. These nerve cells control the muscles in your body, and the diseases can lead to muscle weakness and wasting.

About motor neurone disease

Your brain sends instructions to muscles that control your voluntary movement (such as walking and swallowing) along nerve cells called motor neurones. Motor neurone disease gradually destroys these nerve cells, which causes weakness and wasting of your muscles.

Around two in every 100,000 people in western countries develop motor neurone disease each year. It tends to occur after the age of 40 – usually between 50 and 70, although some types of motor neurone disease can appear in young adults and even in children. Motor neurone disease affects twice as many men than women.

Motor neurone disease can affect different people in different ways. There are also different types of motor neurone disease. The way motor neurone disease affects your life will depend on the type you have and also the age you get it. Some types of motor neurone disease progress slowly but others, such as amyotrophic lateral sclerosis, can be fatal.

Types of motor neurone disease

There are three main types of motor neurone disease, which affect different groups of nerves.

  • Amyotrophic lateral sclerosis is the most common type of motor neurone disease. It mainly causes muscle cramps, weakness, wasting of muscles and stiffness in your legs.
  • Progressive bulbar palsy affects about one in four people with motor neurone disease. It mainly affects speech and swallowing.
  • Progressive muscular atrophy is a less common type of motor neurone disease. It causes muscle weakness, particularly in your hands, before it spreads to the rest of your body. It also causes muscle wasting and twitching.

Symptoms of motor neurone disease

Motor neurone disease develops at different speeds in different people and affects individuals in different ways.

The disease usually begins very gradually and you may just feel tired to start with. The first symptoms of muscle problems are often having clumsy fingers and a weak grip. Other symptoms include:

  • wasting of muscles
  • muscle cramps, spasms or twitching – called fasciculations
  • difficulty swallowing
  • slurred speech
  • excess saliva or difficulty swallowing saliva
  • coughing after swallowing or a feeling of choking

These symptoms aren’t always caused by motor neurone disease but if you have them, see your GP.

Although thinking and reasoning aren’t usually affected, it’s possible you may have some level of intellectual difficulty or a change in personality later on in the disease.

You may have symptoms in just certain parts of your body to begin with but they will eventually spread to the rest of your body. As the disease progresses you may have the following problems.

  • Muscle weakness in your arms, hands and legs may make everyday tasks more difficult, such as turning taps or door handles, brushing your hair or fastening buttons. Raising your foot with each step may be difficult, which may cause your feet to drag on the floor. You may find it difficult to hold your head upright if your neck muscles weaken.
  • Your throat muscles may be affected and this may lead to difficulties swallowing and with speech.
  • You may laugh or cry more easily. This may be due to physical changes caused by the disease, rather than changes in how you’re feeling.
  • The muscles of your chest wall may be affected, which can make it difficult to breathe.

Causes of motor neurone disease

The exact reasons why you may develop motor neurone disease aren't fully understood at present. Research is underway to understand the cause.

A small number of people with motor neurone disease have a family history of the condition, indicating that it may be possible to inherit the condition. However for most people with motor neurone disease, the disease appears for no apparent reason. This is called sporadic motor neurone disease.

Diagnosis of motor neurone disease

Your GP will ask about your symptoms and examine you. If your GP suspects you may have motor neurone disease he or she will refer you to a neurologist (a doctor who specialises in conditions that affect the nervous system).

There is no single diagnostic test for motor neurone disease. Your neurologist will usually make a diagnosis based on your symptoms and what he or she finds when examining you. Your neurologist will also try to rule out other neurological conditions.

Tests to help diagnose motor neurone disease include the following.

  • Blood tests – these will assess how well organs such as your kidneys and liver are working and will rule out other conditions that might be causing your symptoms. ¬
  • An electromyography – this test uses fine needles to measure the electrical activity of your muscles.
  • Nerve conduction test – this measures the speed at which your nerves carry electrical signals by applying an electrical impulse through a small pad on your skin.
  • Magnetic resonance imaging (MRI) scan – this uses magnets and radiowaves to produce images of the inside of your body. An MRI scan will help to rule out other conditions that may be causing your symptoms.

Treatment of motor neurone disease

Medicines

There isn’t a cure for motor neurone disease but there are medicines available to slow down the progress of the disease and manage your symptoms.

  • Riluzole has been shown to slow down the progress of motor neurone disease by a few months. The National Institute for Health and Care Excellence (NICE) has recommended riluzole for the treatment of one of the types of motor neurone disease – amyotrophic lateral sclerosis.
  • Muscle relaxants can help reduce muscle stiffness.
  • Medicines such as phenytoin can treat muscle cramps.
  • Anti-inflammatory medicines and painkillers can help reduce pain and discomfort.

It’s important to discuss your symptoms with your GP or doctor so that he or she can help you to effectively manage them.

Your doctor may offer you a mask ventilator system to wear at night while you’re asleep. This should help you to breathe easier and may slow the progress of motor neurone disease. The machines are small and easy to carry.

Newer treatments

Researchers are continually improving their understanding of motor neurone disease and investigating new treatments. If you’re interested in taking part in a clinical trial, ask your doctor for advice.

Scientific discoveries that may lead to future treatments include:

  • faulty genes that may be involved in the development of motor neurone disease – this may one day lead to a gene therapy to stop the effect of the genes in the development of motor neurone disease
  • stem cell research – stem cells are the body’s ‘master cells’ and have the ability to divide and develop into any type of cell; in effect they could be used to create new motor neurones

Complementary therapies

Complementary therapies will not stop the progression of motor neurone disease but may help with some of the symptoms. For example, it may help reduce anxiety and stress and make your day-to-day life more comfortable.

Complementary therapies include:

Talk to your GP or doctor before you start any complementary therapy. Also make sure your practitioner is fully qualified and registered with or affiliated to a recognised body.

Help and support

A team of professionals will help support you, and your family. Examples of health professionals who can help you manage your symptoms include the following. 

  • A speech and language therapist can help you with any speech and swallowing problems.
  • A physiotherapist can help you with any physical symptoms, such as pain from stiff joints and muscle spasms.
  • An occupational therapist can give you advice on how to maintain your independence and use equipment around the home.
  • A dietitian can give you advice on a healthy diet and maintaining a healthy weight.

The support of your family and friends is often invaluable and can help with anxiety and stress.

Patient associations, such as the Motor Neurone Disease Association, provide information and services that may make life easier and more comfortable. It may also help to contact other people who have motor neurone disease through charities and patient groups, as they can be a good source of support and advice.

 

Produced by Rachael Mayfield-Blake, Bupa Health Information Team, November 2012. 

For answers to frequently asked questions on this topic, see FAQs.

For sources and links to further information, see Resources.

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  • This information was published by Bupa's Health Information Team and is based on reputable sources of medical evidence. It has been reviewed by appropriate medical or clinical professionals. Photos are only for illustrative purposes and do not reflect every presentation of a condition. The content is intended only for general information and does not replace the need for personal advice from a qualified health professional. For more details on how we produce our content and its sources, visit the about our health information page.

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