What is MND?
You’re likely to have a lot of questions about motor neuron disease (MND) if you or a loved one has been diagnosed with the condition, or you’re worried you may have MND.
To help you get the information you want and need, we’ve answered the questions we’re most often asked about MND.
Also, please remember that you can always contact MND Scotland on 0141 332 3903 or info@mndscotland.org.uk to ask any question you want or simply chat about how you’re feeling.
What is MND?
Motor neuron disease (MND) is the general name given to a group of illnesses which affect nerves called motor neurons in the brain and spinal cord.
In a healthy person, the motor neurons carry signals from the brain directly to the muscles. But if you’re living with MND, the disease can prevent these signals from reaching your muscles.
Over time, this can lead to muscles becoming weaker and weaker until they stop working. This can affect the way your body works.
MND is a progressive, life-shortening illness, and there is currently no cure for the disease. However, symptoms can be managed to help you live the best quality of life possible and make memories with your loved ones.
Please note: The below information contains details about life expectancy. Only read it when you feel ready to do so.
- Support Video
What is MND?
Follow the stories and the experiences of people who have been diagnosed with motor neuron disease (MND) and their carers.
What are the symptoms of MND?
MND affects every individual differently. You may not develop all the symptoms, and your symptoms may
progress at a different rate to someone else with MND. Life expectancy can also vary, depending on the type
of MND you have and the way it affects you.
You may develop some or all the following symptoms:
Muscle weakness
Joint and muscle pain
Muscle cramping
Leg and foot swelling
Poor posture and neck control
Speech and communication problems
Sleep and positional problems
Fatigue
Changes to sex life
Eating and drinking problems
Choking
Mucus and excessive saliva
Mouth conditions
Constipation
Breathing problems
Personality and behavioural changes
A small number of people may develop a type of dementia called frontotemporal dementia (FTD). This can lead to severe changes in thinking and behaviour. As a result, appropriate additional support will be needed.
When should I visit my GP?
You should see your GP if you’re experiencing the symptoms of motor neuron disease listed above.
Many neurological conditions have similar symptoms to MND. But getting a correct diagnosis as early as possible is important, as it can help you get the care and support you need.
You should also speak to your GP if a close relative has MND or frontotemporal dementia and you’re worried you may be at risk of developing the condition. Your doctor may refer you to genetic counselling to talk about your risk and the tests you can have.
Are there different types of MND?
Depending on the way symptoms present, you may be diagnosed with a specific type of motor neuron disease. The four main types of MND are:
ALS is the most common form of MND and affects upper and lower motor neurons. This means you may experience muscle weakness and muscle stiffness in any part of your body.
Although the majority of people diagnosed with ALS are aged over 40, about 10% are younger.
Generally, ALS progresses much slower in people aged under 40 than in older age groups.
The average life expectancy for someone diagnosed with ALS is two to five years from the onset of symptoms.
About 20–25% of people living with MND are diagnosed with progressive bulbar palsy (PBP). This type of MND mainly affects the muscles of the face, throat and tongue.
Early symptoms of PBP normally involve the slurring of speech or swallowing difficulties. You may also have problems with the thickness or amount of saliva you produce.
Progressive bulbar palsy is a term reserved for MND that only affects a group of muscles in the head and neck (the bulbar muscles). If you have problems with the bulbar muscles first and then develop problems in the arms or legs, this is likely to be diagnosed as a form of ALS, rather than PBP.
The average life expectancy for someone diagnosed with PBP is six months to three years from the onset of symptoms.
About 5–7% of people living with MND are diagnosed with PMA. This type of motor neuron disease affects the lower motor neurons and causes muscle wasting (atrophy) and weakness, loss of weight and muscle-twitching.
The average life expectancy for someone diagnosed with PMA is usually longer than five years.
Primary lateral sclerosis is a rare type of motor neuron disease and only 1–2% of people living with MND are diagnosed with it. PLS affects the upper motor neurons and causes increased muscle tension. This results in stiffness of the limbs, and especially in the legs.
This form of MND typically affects people over the age of 50 and progresses slowly. People living with PLS can generally live a normal lifespan.
How quickly does MND progress?
MND affects everyone differently, so it can be difficult to say definitively how long someone will have the illness for. It will also depend on what type of MND you have (see above).
Generally, the longer the time between first symptoms and diagnosis, the slower the
condition is progressing.
What are the treatments for MND?
Currently, there is no cure for MND. However, there is a drug called riluzole (Rilutek®) that is used to slow the progression of the ALS form of MND. Your consultant will offer you this treatment if it’s appropriate for you.
You can also speak to your MND clinical nurse specialist about how symptoms and any other problems can be managed.
We are also key funders of the UK’s biggest MND clinicial drug trial - MND-SMART - which aims to find meaningful treatments for MND.
FAQs
Frequently asked questions
If you or someone you know has been diagnosed with MND, you may have questions about why this has happened and how the condition works. We have included a list of FAQs below to answer some of your questions.
Why have I developed MND?
It’s not known why some people develop MND and others don’t. It’s thought that someone’s genes may make them more prone to MND, but what triggers the disease to develop is not yet known.
Around the world, there’s a lot of research being carried out to understand how MND develops and identify new treatments for the condition.
You can help support this work by signing up to be part of CARE-MND, a register of people living with MND in Scotland, which is used monitoring and research purposes.
Why can it take so long to get a diagnosis?
MND is an extremely difficult condition to diagnose in its early stages because few cases follow exactly the same pattern. Which muscles are affected, the order in which they are affected and the way they are affected can vary so much that there are almost no rules to help predict how any one case will develop.
Can MND be passed on to others?
MND is not infectious but a small number of cases are inherited, i.e. run in the family. This type of MND is called familial MND and it affects between 5–10 people in every
100 cases.
If you have familial MND, it’s likely that blood relatives have been affected by the condition in the past.
If yours is the first case of MND in your family, then you probably have what is known as sporadic MND.
Around 9 out of 10 cases of MND are thought to be sporadic.
Support for people living with MND
Learn more about all the support and services we offer to help people living with MND understand their illness, prepare for the future and have a good quality of life.
Support for carers
If you care for someone living with MND, we are here to support you too. Find out more about our free wellbeing, practical and financial services.