What is MND?

“I hadn’t a clue what motor neurone disease was.” Person with MND

Motor neurone disease (MND) describes a group of diseases that affect the nerves (motor neurones) in the brain and spinal cord that tell your muscles what to do. With MND, messages from these nerves gradually stop reaching the muscles, leading them to weaken, stiffen and waste. Watch the short animation shown above for an overview about the disease, then select from the following to find out more. Our information covers health and social care in England, Wales and Northern Ireland – please contact MND Scotland if you live in Scotland.

What are the basic facts about MND?

MND can affect how you walk, talk, eat, drink and breathe. Some people also experience changes to their thinking and behaviour. However, MND affects everyone differently. Not all symptoms will affect everyone, or in the same order. Symptoms also progress at varying speeds, which makes the course of the disease difficult to predict.

MND is life-shortening and there is no cure. Although the disease will progress, symptoms can be managed to help achieve the best possible quality of life.

There is a 1 in 300 risk of getting MND across a lifetime. It can affect adults of any age, but is more likely to affect people over 50.

MND affects up to 5,000 adults in the UK at any one time. As this is not a common disease, general health and social care professionals may not see many cases of MND. This means it is important to seek out specialists who have appropriate experience in its treatment and care – usually with referral to neurological services. For more information, see our pages about  What help is available?

We provide an overview about MND in our Introduction to motor neurone disease booklet, which is also available as an audio version.

We provide further statistics about MND if you would like more detail, but please be aware these contain sensitive content.

You may also wish to find out about a similar condition called Kennedy’s disease.

What causes MND?

It is still not possible to give a clear answer about the causes of MND, as different things may trigger the disease for each individual.

It is thought that a number of genetic and environmental factors need to combine before MND can develop. Finding out which factors are involved and how they combine is helping researchers discover why the disease begins.

Ongoing research is making progress and gathering pace. As a result, knowledge about the disease is constantly advancing. You can read more about this research and the causes of MND on our research pages.

“I am optimistic there will be a cure one day. It’s a challenge for the 21st century and I think science will find a way.” Person with MND

See the next drop-down option on this page for details about inherited MND, which can affect some cases of MND.

Can MND be inherited?

See also the previous drop-down option on this page, about the causes of MND.

In most cases, there is no apparent family history of the disease. A variety of genetic and environmental factors may be involved, which could be different for each individual.

For up to 1 in 10 people with MND, there is evidence of a family history with the disease. This is where a genetic mistake is passed down or ‘inherited’, but it is impossible to predict when or if this will cause MND to develop. Other triggers may still be needed for the disease to actually begin.

Some of the genes that play a part in inherited MND have been discovered. They can usually be identified through genetic testing, but this is not always conclusive.

Where a family history exists, choosing to be tested can be a difficult decision and affects wider family members. Genetic counselling is recommended, as this provides facts and guidance about options.

If you have MND and want to know more about genetic counselling, ask your neurologist for advice. If someone in your family has been diagnosed and you want to find out more, ask your GP to be referred to a neurologist for guidance.

You can read more about inherited MND, and some of the genes that have been discovered, on our research pages.

Which tests are included for MND?

If your GP thinks you have a condition affecting the nerves or brain (a neurological problem), you will be referred to a neurologist. There is no single test to work out if you have MND, but a range of tests can help rule out other causes. You usually attend these tests as an outpatient, but in some cases you may be required to spend a short stay in hospital.

Depending on your symptoms, your neurologist may advise the following, or other tests if useful:

Clinical examination: helps the neurologist recognise signs and work out which tests are appropriate, depending on your symptoms.

Blood tests: look for a rise in a substance called creatine kinase. This is produced when muscle breaks down. It is sometimes found in the blood of people with MND, but may indicate other conditions.

Electromyography (EMG): is sometimes called the needle test, as fine needles record the natural nerve impulses within certain muscles. When muscles start to lose their nerve supply, this can be detected, even if the muscle activity still seems normal.

Nerve conduction tests: apply an electrical impulse through a small pad on the skin. This measures the speed at which nerves carry electrical signals.

Transcranial Magnetic Stimulation (TMS): measures the activity of the upper motor neurones to help diagnosis.

Magnetic Resonance Imaging (MRI): scans involve being placed in a cylinder-like machine. The machine takes internal images of the body. These help rule out conditions such as stroke, Alzheimer’s disease, Parkinson’s disease, multiple sclerosis, tumours and trapped nerves, as well as injury to spine and brain.

Are there different types of MND?

Motor neurone disease (MND) causes a range of symptoms, which progress at varying speeds. These can appear in a different order for each individual, but you may be diagnosed with a particular type of MND, due to the way symptoms present. The four main types are described below. Each type does not describe a completely separate disease, just a different form. In other words, each type is a way of describing how the disease is likely to affect you.

Each type can be difficult to diagnose, as they have overlapping symptoms. Over time, symptoms and the rate at which they progress become clearer. This means your diagnosis may need to be reviewed and changed to another type.

 Please be aware the information below includes details about life expectancy, so read when you feel ready to do so. Life expectancy can vary depending on the type of MND and the way it affects you.

Amyotrophic lateral sclerosis (ALS): is the most common form of MND, with weakness and wasting in the limbs, muscle stiffness and cramps. Someone may notice they are tripping when walking or dropping things. Life expectancy is usually two to five years from the onset of symptoms.

Bulbar onset MND or Progressive bulbar palsy (PBP): affects a smaller number of people than typical ALS, and mainly affects the muscles of the face, throat and tongue. Early symptoms may include slurring of speech or difficulty swallowing. Life expectancy is between six months and three years from onset of symptoms.

Progressive muscular atrophy (PMA): affects only a small proportion of people. Early symptoms may show as weakness or clumsiness of the hands. Life expectancy is usually more than five years. See information sheet 2D – Progressive muscular atrophyContact our MND Connect helpline for details about an email group for people with PMA or PLS (the MND Association is not responsible for the group or moderation of its content).

Primary lateral sclerosis (PLS): is a rare form of MND, causing mainly weakness in the lower limbs, although some people may experience clumsiness in the hands or speech problems. PLS progresses slowly and life expectancy can be 10-20 years. See information sheet 2C – Primary lateral sclerosisContact our MND Connect helpline for details about an email group for people with PMA or PLS (the MND Association is not responsible for the group or moderation of its content).

Kennedy’s Disease: is not a type of MND, but has similar symptoms. It is a rare condition affecting the motor neurones, with increasing weakness and wasting of the muscles. Unlike MND, Kennedy’s also causes hormonal changes. Due to their similarities, MND and Kennedy’s disease are sometimes confused at diagnosis. Most people with Kennedy’s disease live an average life span. See our Kennedy’s disease page and Information sheet 2B – Kennedy’s disease

 

What are the symptoms?

MND affects everyone differently. Not everyone has all the symptoms, or in the same order, and the speed at which symptoms progress can vary. Seek help from your health and social care professionals at the first sign of any change.

MND cannot be stopped or reversed, but therapies, equipment and medication can help manage symptoms. These can all help you achieve the best possible quality of life. We cover symptom control in our range of information sheets and our guide, Living with motor neurone disease at: Information for people with and affected by MND.

You may have some or all of the symptoms listed below:

  • muscle weakness, with loss of muscle mass (wasting), and movement and mobility problems
  • muscle cramps and spasms, including rippling sensations (known as fasciculation)
  • stiff joints, which may limit range of movement
  • pain or discomfort, as a result of other symptoms (not usually caused by MND directly)
  • speech and communication problems, affecting how you speak, gesture and show expression
  • swallowing difficulties, affecting how you eat and drink
  • saliva problems, where thin saliva pools in the mouth or saliva becomes thick and sticky
  • weakened coughing, which makes it harder to clear the throat
  • breathing problems, which can lead to breathlessness and fatigue
  • emotional lability, with inappropriate emotional responses, such as laughing when feeling sad
  • changes to thinking and behaviour, for about half of those diagnosed with MND.

Changes to thinking and behaviour are usually mild, but a small number of people with MND may develop frontotemporal dementia, which is more severe and needs additional care support. See our information sheets 9A to 9C on emotions, thinking and behaviour on our information for people with or affected by MND page.

What is not affected by MND?

The senses are usually unaffected, so people can still see, hear, taste smell and feel sensations. Some people may experience changes to taste, skin hypersensitivity or problems with temperature regulation.

Bladder and bowels are not usually affected by MND, but it may be harder to get to the toilet in time if mobility is affected. Constipation can also be a problem if you become less mobile or get dehydrated. Ask your GP for guidance.

Sexual function is not affected, but sexual expression may become more difficult if mobility and movement are restricted. See information sheets 13A and 13B on sex and relationships on our information for people with or affected by MND page.

What is ALS?

MND and ALS are different descriptions of the same disease. In the UK we use the term motor neurone disease (MND) and in the USA they use amyotrophic lateral sclerosis (ALS).

There are several forms of MND. ALS is the most common type. MND is an umbrella term for all forms of the disease. In the USA, ALS is used as the umbrella term.

You can find out more about the types of MND in Are there different types of MND?  above.

Tell us your thoughts on the About MND area of the website  information-standard-small Page last updated: 07/18
Next review: 05/19

For further information and support, contact our MND Connect helpline:
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