What is MND?

Motor Neurone Disease (MND) is a rapidly progressing terminal illness, which stops signals from the brain reaching the muscles.

If you, or a loved one, has been diagnosed with MND you may have a lot of questions about MND and what will happen.

Below we've answered some common questions you may have, but if you want to ask anything else at all, just get in touch by calling 0141 332 3903 or emailing info@mndscotland.org.uk. We also have lots of free services to help you and your family at this time. Find out more about how we can help you here.

You can also download our guide 'Motor Neurone Disease - Essential Information' if you'd like to print or save any of the information below.  

Motor Neurone Disease (MND) is the general name given to a group of illnesses which affect the body’s motor nerves – these are called motor neurones. MND is a progressive, incurable illness.

In a healthy person, the motor neurones carry signals from the brain directly to the muscles. However, MND stops signals from the brain reaching the muscles. Therefore, over time muscles weaken and eventually stop working.

It is important to remember that not everyone is affected by MND in the same ways. Every case of MND takes its own course, but the disease may cause someone to lose the ability to walk, talk, eat, drink or breathe unaided. Some people may also experience changes in their behaviour, personality and the way they think. This may affect their ability to plan tasks on a daily basis and how they communicate with others. A small number of people may experience severe changes which are associated with a type of Dementia, called Frontotemporal Dementia (FTD).

However, not everyone will experience all of the possible symptoms. 

 

MND is the name given to a group of similar illnesses. These illnesses all cause damage to the nerves called motor neurones. Motor neurones are the nerves which carry the messages from our brain to our muscles. Without these messages the muscles stop working.


There are three main types of MND:

  • Amyotrophic Lateral Sclerosis (ALS)
    ALS is the most common form of MND and affects both upper and lower motor neurones.

    This means someone may experience both muscle weakness and muscle stiffness in any part of their body. Although the majority of people with ALS are over the age of forty, about 10% of those affected are younger. In general the disease tends to be much slower progressing in the under forties than in older age groups.

    For around 25% of people diagnosed with MND, their first symptom is a problem with their speech, which is diagnosed as Progressive Bulbar Palsy (PBP). Some people regard this as a sub-type of ALS. The early symptoms of PBP normally involve slurring of speech due to loss of nerves to the mouth and tongue, and early development of swallowing difficulties is also common.
  • Progressive Muscular Atrophy (PMA)
    PMA affects the lower motor neurones 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 the life expectancy of those with ALS.

  • Primary Lateral Sclerosis (PLS)
    PLS affects the upper motor neurones and causes increased muscle tension. This results in stiffness of the limbs, known as spasticity, especially in the legs. This form of MND typically affects people over the age of 50. It is a very rare type of MND which progresses slowly, with life expectancy usually normal or near normal. 

There is currently no test to confirm someone has MND.  Where tests are carried out, these are used to rule out other conditions. MND is extremely difficult condition to diagnose in its early stages because few cases of MND 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. It can also take a long time to diagnose because the neurologist needs to see progression of symptoms over time for it to be MND.

There is currently no cure for MND but the symptoms and problems that come with it can usually be managed themselves in different ways, for example non-invasive ventilation (NIV) can help with breathing or a feeding tube (PEG) can assist with nutrition. You should also speak to your Scottish MND Clinical Specialist about the best ways to manage your symptoms.

The only drug available to directly affect MND is called Riluzole or Rilutek, it is thought this drug slows down the progression of MND. For those with swallowing difficulties it is also available in liquid form. Please speak to your GP or Consultant about what form of treatment would be best for you.

MND is not infectious, but a small number of cases are inherited or ‘run in the family.’ This type of MND is called ‘Familial MND’ and affects between 5 and 10 people in every 100 cases. If MND has been inherited there will usually be a family history of the disease having affected other blood relatives before you. If yours is the first case of MND in your family, then you probably have what is known as ‘Sporadic MND’, which so far is not seen to be linked to 'Familial MND'. Around nine out of ten cases of MND are thought to be sporadic.

We don’t know why some people get MND and others don’t. It is thought that someone’s genes may make them more prone to MND but what triggers the disease to develop is not yet known. However, there is a lot of research taking place around the world to try to answer this question. You may be able to help find the answer by agreeing to have your details entered in the Scottish MND Register.

This will depend on what type of MND you have. MND also affects everyone differently so it can be difficult to say definitively how long someone will have the illness for. In general the longer the time between first symptoms and diagnosis the slower progressing the condition will be.

 

 

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