Around four to five in every 100,000 people in the UK have motor neurone disease. Most people who get it are over 40, but young adults and even children can get some types of the condition. Motor neurone disease affects twice as many men as women.
Motor neurone disease affects different people in different ways. The way it affects your life will depend on the type you have, and how old you are when you get it. Some types of motor neurone disease progress slowly, but eventually it becomes more debilitating, and you’ll need more help with everyday activities.
There are different types of motor neurone disease, which affect different groups of nerves.
- Amyotrophic lateral sclerosis (ALS) is the most common type. It often affects the muscles in your arms, legs or face first, causing muscle cramps, weakness and wasting. You might also have stiffness in your arms and legs.
- Progressive bulbar palsy affects about one in five people with motor neurone disease. It mainly affects the muscles you use to talk, chew and swallow.
- Progressive muscular atrophy is a less common type. It often causes muscle weakness in your hands and feet first, before it spreads to the rest of your body.
- Primary lateral sclerosis. This is another uncommon type that mainly affects the muscles in your leg first.
Motor neurone disease develops at different speeds and progresses in different ways in everyone who has it. It usually begins very gradually – at first, you might just feel tired.
Other symptoms you may develop later will depend on what type of motor neurone disease you have. You might start to notice problems such as 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
- difficulty swallowing
- slurred speech
- producing too much saliva or having difficulty swallowing it
- coughing after swallowing, or feeling like you're choking
If you have any of these symptoms, see your GP.
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 taps or door handles or fastening buttons more difficult. It might become difficult to raise your foot with each step so you drag your feet when walking. You may find it hard to hold your head upright if your neck muscles weaken.
- Your throat muscles may be affected, which can make it difficult to swallow. You might have difficulties with your speech too.
- 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 difficult to breathe.
Motor neurone disease can affect your memory, and your personality may gradually change as the condition progresses, but this doesn't happen to everybody.
Your GP will ask about your symptoms and examine you. If they suspect you might have motor neurone disease, they’ll refer you to see a neurologist. This is a doctor who specialises in conditions that affect the nervous system, including the brain and spinal cord.
There isn't a single diagnostic test for motor neurone disease. Your doctor will usually make a diagnosis based on your symptoms and their physical examination of you.
Your doctor may also suggest you have some tests to rule out other conditions that might be causing your symptoms. These tests can include:
- blood tests
- an electromyogram (EMG) – this test uses fine needles to measure the electrical activity of your muscles
- nerve conduction test – a health professional will measure the speed at which your nerves carry electrical signals by applying an electrical impulse through an electrode on your skin
- an MRI scan
There isn’t a cure for motor neurone disease. Your treatment will focus on helping you to keep functioning in your daily life so you can live as full a life as possible.
A multidisciplinary team of health professionals will help support you and your family. Here we’ve explained the roles of just some of the people who can help you manage your symptoms.
- A speech and language therapist can help you with speech and swallowing problems.
- A physiotherapist can help you to stay able to move around. They can also help you with any physical symptoms, such as muscle weakness and pain from stiff joints and muscle spasms.
- An occupational therapist can give practical assistance to help you manage everyday tasks and increase your independence. They can advise you about using equipment that has been adapted to help you with tasks around the home.
- A dietitian can give you advice on a healthy diet and maintaining a healthy weight.
There are medicines that can slow down the progression of motor neurone disease and manage your symptoms. We’ve described some of them here.
- Riluzole has been shown to slow down the progression of motor neurone disease by around a few months. It’s used to treat amyotrophic lateral sclerosis.
- Muscle relaxants can help to ease stiff muscles.
- Medicines such as quinine and baclofen can treat muscle cramps.
- Medicines such as hyoscyamine can help to reduce your saliva.
- Anti-inflammatory medicines and painkillers can 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 the muscles you use to breathe are affected by motor neurone disease, your doctor may offer you a mask that attaches to a ventilator. You wear this at night while you’re asleep, but you can also use it during the day if it helps. It should help you to breathe more easily and may slow the progress of motor neurone disease (but will not stop it). The machines are small and easy to carry around.
Treatments in development
Researchers are continually striving to improve their understanding of motor neurone disease and investigating new treatments.
Scientific discoveries that may lead to treatments in the future include the following.
- 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 motor neurone disease.
- Stem cell research has shown that stem cells have the ability 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).
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 won’t stop the progression of motor neurone disease but you may find they help with some of your symptoms, such as stress.
Complementary therapies include:
It’s best to talk to your doctor before you start any complementary therapy. Also make sure your therapy practitioner is fully qualified and registered with or affiliated to a recognised body.
It’s not yet clear exactly why some people develop motor neurone disease.
Some people with motor neurone disease have a family history of the condition, so you may inherit it. For more information, see our FAQ: Family history of motor neurone disease.
Other things in your environment, such as smoking or working with chemicals, may affect your chances of getting motor neurone disease. But most people with the disease get it for no apparent reason. This is called sporadic motor neurone disease.
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 might also find it helps to contact other people who have motor neurone disease through charities and patient groups for support and advice.
People in the advanced stages of motor neurone disease can sometimes produce too much saliva. When this happens, doctors can prescribe medicines to reduce the amount of saliva you produce. Improving your posture and changing your diet, may help too. You may also find a suction pump helps.
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 produce. 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 stop saliva pooling in your throat.
You might find your saliva gets thick if you’re dehydrated, and you may find it difficult 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 the mucus. 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 place in your mouth to suck out excess saliva. You can operate it yourself or a carer can do it for you.
Yes, motor neurone disease can run in families. It’s called familial motor neurone disease (FMND) but it isn’t very common. Fewer than one in 10 people with motor neurone disease will have a family member with the condition.
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 – it may increase your risk of developing motor neurone disease. Around half of 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 motor neurone disease. Doctors don’t yet know why this is the case.
Yes. New treatments for motor neurone disease are being investigated in clinical trials. But remember, not all such treatments work or will make it through the trial process.
Clinical trials are designed to find out if new treatments are safe and effective. They’re usually done in three stages.
- Phase I trials of a new treatment test the medicine on a small number of healthy volunteers or patients to find out what the safe dose is. These trials also check to see if there are side-effects and how the body copes with the treatment.
- Phase II clinical trials test the medicine in a larger number of patients with the disease. These trials aim to find out more about the safety of the medicine as well as if it has a positive effect on the disease.
- Phase III clinical trials compare the new treatment with the best currently available treatment to see if it works and how safe it is. Sometimes phase III trials involve thousands of patients in many different hospitals and even different countries.
If you’re interested in taking part in a clinical trial, ask your doctor.
- Motor neurone disease: assessment and management. National Institute for Health and Care Excellence (NICE), 24 February 2016. www.nice.org.uk
- Pathology of motor neuron disorders. Medscape. emedicine.medscape.com, updated 28 April 2014
- Central nervous system anatomy. Medscape. emedicine.medscape.com, updated 28 June 2016
- Motor neurone disease. PatientPlus. patient.info/patientplus, last checked 24 April 2015
- Neurology. Oxford handbook of general practice (online). Oxford Medicine Online. oxfordmedicine.com, published April 2014
- Amyotrophic lateral sclerosis. BMJ Best Practice. bestpractice.bmj.com, last updated 5 August 2015
- Motor neurone disease. Brain and Spine Foundation. www.brainandspine.org.uk, last checked July 2015
- Guidance on the use of riluzole (Rilutek) for the treatment of motor neurone disease. National Institute for Health and Care Excellence (NICE), 23 January 2001. www.nice.org.uk
- Electromyography and nerve conduction studies. Medscape. emedicine.medscape.com, updated 9 October 2015
- What’s happening in MND research? Motor Neurone Disease Association. www.mndassociation.org, published 2016
- Stem cells and MND. Motor Neurone Disease Association. www.mndassociation.org, published 2 April 2015
- Complementary therapies. Motor Neurone Disease Association. www.mndassociation.org, last revised May 2015
- Amyotrophic lateral sclerosis. Medscape. emedicine.medscape.com, updated 23 March 2016
- Swallowing difficulties. Motor Neurone Disease Association. www.mndassociation.org, created August 2013
- What are the different types of clinical research? US Food and Drug Administration (FDA). www.fda.gov, last updated 24 February 2016
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Reviewed by Rachael Mayfield-Blake, Freelance Health Editor, Bupa Health Content Team, September 2016.
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