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Motor neurone disease


Expert reviewer, Dr Jeremy Rees, Consultant Neurologist
Next review due April 2022

Motor neurone disease (MND) describes a group of diseases that affect the nerves in your brain and spinal cord. It can make your muscles weak and waste away.

There isn’t a cure for motor neurone disease – it’s a terminal condition. But you can take medicines to slow down the disease, manage your symptoms and improve your quality of life.

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About motor neurone disease

Motor neurone disease affects a group of nerve cells called motor neurones that are in your brain and spinal cord. These nerve cells control the muscles in your body that cause everyday movements, such as walking, breathing and swallowing. Motor neurone disease gradually destroys these nerve cells. This can cause your muscles to become weak and waste away.

Around seven in every 100,000 people in the UK have motor neurone disease. Most people who get it are over 40. Motor neurone disease affects twice as many men as women.

Motor neurone disease can cause different problems depending on the type you have. See our section Types of motor neurone disease, below, for more information. With all types, symptoms get worse over time and individuals with motor neurone disease will eventually die from, or with, the condition. The disease has a huge impact on people’s lives. How long people live with motor neurone disease depends on the type and varies from one person to the next.

For information and support if you, or someone you know, has been diagnosed with motor neurone disease, visit the MND association website or contact their MND Connect helpline on 0808 802 6262.

Types of motor neurone disease

Motor neurone disease can be grouped by the type of motor neurones and area of your body affected. There’s a lot of overlap between the different types of motor neurone disease and symptoms, so it can be difficult to group them exactly. It’s also possible that the type of motor neurone disease may develop and change over time.

Here we outline the main types of motor neurone disease.

  • Amyotrophic lateral sclerosis (ALS). This is the most common type of motor neurone disease. It often affects the muscles in your arms, legs or face first, causing muscle cramps, weakness and wasting. You may also have stiffness in your arms and legs.
  • Progressive bulbar palsy affects about one in five people with motor neurone disease. It affects mainly the muscles you use to talk, chew and swallow.
  • Progressive muscular atrophy is less common. It often causes muscle weakness in your hands and feet first, before it spreads to the rest of your body.
  • Primary lateral sclerosis is another uncommon type of motor neurone disease. This affects mainly the muscles in your leg first.

Symptoms of motor neurone disease

If you have motor neurone disease, there are lots of things that aren’t affected by the condition. These include your:

  • hearing
  • sight
  • ability to feel touch and other sensations
  • ability to have sex – although other symptoms may make this more difficult

Your bladder and bowel aren’t usually affected either, meaning you’ll be able to control your bladder and bowel movements.

However, motor neurone disease affects everyone differently. Symptoms get worse at different speeds and in different ways. The disease usually begins very slowly – at first, you may just feel a bit weak and tired.

The symptoms you may develop later on will depend on which type of motor neurone disease you have. You may notice you’re having trouble picking things up or tripping over quite a bit. Other symptoms may include:

  • your muscles feeling weak and wasting away
  • muscle cramps, spasms or twitching – these are called fasciculations
  • finding it hard to swallow
  • slurred speech
  • making too much saliva or finding it hard to swallow your saliva
  • coughing after swallowing, or feeling like you're choking

If you have any of these symptoms, see your GP.

Long-term problems

You may have symptoms in certain parts of your body to begin with, but eventually they’ll start to spread to other areas. As motor neurone disease progresses, you may develop the following problems.

  • Weak muscles in your arms, hands and legs. This may make everyday tasks, such as turning keys or door handles, writing or fastening buttons, more difficult. You may trip or fall over more easily. You may find it harder to lift up your foot with each step so you drag your feet when you walk. You may find it hard to hold your head upright if your neck muscles are weak.
  • Your throat muscles may be weakened, which can make it difficult to swallow. Your tongue can be affected too, which may make it harder to talk.
  • You may laugh or cry more easily. This can be because of 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 harder to breathe. If your lungs are affected, you may also get very tired easily and feel sleepy during the day.
  • Motor neurone disease can affect your memory, and your personality may gradually change as the condition progresses. But this doesn't happen to everyone.

Diagnosis of motor neurone disease

Your GP will ask about your symptoms and examine you. If they suspect you may have motor neurone disease, they’ll refer you to a neurologist. This is a doctor who specialises in conditions that affect the nervous system, including the brain and spinal cord.

Motor neurone disease can’t be diagnosed with any specific tests. Your doctor will usually make a diagnosis based on your symptoms and their physical examination of you. They may use the following tests to confirm the diagnosis and rule out any other causes.

  • Blood tests.
  • An electromyogram (EMG) – this test uses fine needles to measure the electrical activity of your muscles.
  • Nerve conduction test – a healthcare professional will measure how quickly your nerves carry electrical signals by applying an electrical impulse through an electrode on your skin.
  • An MRI scan.

Treatment of motor neurone disease

Motor neurone disease can’t be cured, but your doctor can offer several treatments. Some treatments may slow down the progression of the disease. Others may help to control your symptoms, so that you can live as full a life as possible.

A multidisciplinary team of healthcare professionals will help to support you and your family. Here we’ve explained the roles of some of the people who can help you to manage your symptoms.

A speech and language therapist can help you with speech and swallowing problems.

A physiotherapist can help you to move around as easily as possible. They can also help you with any physical symptoms, such as muscle weakness and pain from stiff joints and muscle spasms. Physiotherapy may also help with some breathing problems.

An occupational therapist can give practical advice on managing everyday tasks and staying independent. They can advise you about using equipment that has been adapted to help you with tasks around your home.

A dietitian can give you advice on a healthy diet, drinking plenty of fluids and staying a healthy weight. They can advise on soft or liquid foods if you’re struggling to swallow properly.

Medicines

You can take medicines to slow down the progression of motor neurone disease and manage your symptoms.

  • Riluzole has been shown to slow down the progression of motor neurone disease by around a few months. It’s only used to treat amyotrophic lateral sclerosis.
  • Medicines such as carbocisteine may help to thin out thick saliva.
  • Medicines such as hyoscine may help to reduce your saliva levels.
  • Anti-inflammatory medicines and painkillers may help to relieve any pain and discomfort.

Talk to your doctor about your symptoms so they can help you to manage them.

Help with breathing

If motor neurone disease affects the muscles you use to breathe, your doctor may offer you a mask that attaches to a ventilator. This is called non-invasive ventilation and should help you to breathe more easily. You wear this at night while you’re asleep, but you can also use it during the day. Ventilation may slow down the progression of your motor neurone disease, but won’t stop it. The machines are small and easy to carry around.

Treatments in development

Researchers are constantly striving to improve their understanding of motor neurone disease and create new, effective treatments.

  • We now know that certain genes are involved in the development of motor neurone disease. This means that one day it may be possible to stop these genes causing the disease.
  • Interleukin-2 is part of the immune system and helps to control inflammation. It boosts the production of special immune system cells that help to protect nerve cells from damage. Clinical trials will soon be looking at whether interleukin-2 has any effects on people with motor neurone disease.
  • Stem cell research has shown that stem cells are able to divide and develop into any type of cell. In theory, they could be used to create new motor neurones (the nerve cells that control movement). However, this research is in a very early stage.

These potential treatments are still in development, but may offer new treatment options in the future. If you’re interested in taking part in a clinical trial, ask your doctor for more information.

Complementary therapies

Complementary therapies won’t stop the progression of motor neurone disease. But you may find they can help to ease some of your symptoms, such as stress, tiredness, pain and sleeping problems.

Complementary therapies include:

  • acupuncture
  • meditation
  • massage
  • reflexology

There isn’t any scientific proof that complementary therapies work, but you may decide to use them. If so, talk to your doctor beforehand. Also make sure your therapy practitioner is fully qualified, experienced and registered with, or affiliated to, a recognised body.

Causes of motor neurone disease

It isn’t yet clear why some people have motor neurone disease and others don’t.

Around five in every 100 people with motor neurone disease have a family history of the disease, so you may inherit it. For more information, see our FAQ on Does motor neurone disease run in families?

It’s thought that smoking, working with chemicals and even some sports like football may make you more likely to get motor neurone disease. But most people with the disease get it for no apparent reason. This is called sporadic motor neurone disease.

Help and support

The support of family and friends can be invaluable if you have motor neurone disease. There are also a number of patient associations, which provide information and services. For details, see our section Other helpful websites. You can contact other people with motor neurone disease through charities, patient groups and online forums for support and advice.

Having a long-term medical condition, such as motor neurone disease, can make you feel a bit down. It can also affect your relationships and may lead to depression or anxiety. It’s important to discuss your feelings with your doctor or another healthcare professional. You may find it helpful to see a counsellor.

If you need practical support with everyday living, your doctor can refer you for specialist help, such as occupational therapy. You’ll be able to discuss your specific needs and access suitable equipment, such as mobility aids. You may be able to access some equipment through the NHS or social services. You can also discuss how to make sure you can continue with work, social activities and hobbies for as long as possible. You may need to make some changes to your home.

Frequently asked questions

  • Many people with motor neurone disease make too much saliva. If you find it difficult to swallow, saliva can build up in your mouth and you may dribble. Your doctor can prescribe medicines to reduce the amount of saliva you make. If these don't work for you, they may offer you an injection of botulinum toxin into your salivary glands. Keeping your posture as upright as possible may help to stop saliva pooling in your throat.

    Your saliva may get thicker if you’re dehydrated, which can make it harder to breathe through your mouth. Make sure you drink plenty of fluids. Fruit juices, in particular pineapple juice, can help to break down the protein in your saliva. You can sip juices or freeze them into lollies.

    Your healthcare team may give you a suction pump. This has a small tube that you put in your mouth to suck out excess saliva. You can use the pump yourself or a carer can do it for you.

  • Motor neurone disease can run in families. This is called familial motor neurone disease (FMND) but it isn’t very common. Around five in every 100 people with motor neurone disease have a family member with the disease. Researchers have found several abnormal genes linked to motor neurone disease and these can be passed from parents to their children.

    For most people with FMND, doctors don’t know which gene is faulty. But around two in 10 people with FMND (the amyotrophic lateral sclerosis type) have a faulty gene called SOD1. Doctors don't yet know how this causes the disease. A second gene called C9orf72 has also been found to increase your risk of getting motor neurone disease. Around 40 in every 100 people diagnosed with FMND in Europe have been found to have this gene.

    If you have motor neurone disease, you can have a blood test to see if you have these faulty genes. If you do, other members of your family may want to think about getting tested too. This is called genetic testing. But remember that having the faulty SOD1 or C9orf72 gene (or both) doesn’t mean that you’ll get motor neurone disease. Some people can have a faulty gene but never develop the disease. Doctors don’t yet know why this is the case, but it’s thought that a combination of genetic, environmental and lifestyle factors may be involved.


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  • Reviewed by Laura Blanks, Specialist Health Editor, Bupa Health Content Team, February 2019
    Expert reviewer, Dr Jeremy Rees, Consultant Neurologist
    Next review due April 2022



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