Motor Neurone Disease (MND)

First symptoms

Motor Neurone Disease (MND) is a progressive neurodegenerative disease that attacks the upper and lower motor neurones. Neurones are specialised cells which transmit electrical nerve impulses and so carry information from one part of the body to another. Degeneration of the motor neurones leads to weakness and wasting of muscles, causing various combinations of increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing. Not everyone living with MND experiences all these symptoms - for example, it is possible to have perfectly understandable speech throughout the illness.

The different forms of MND affect people in different ways. There can be a great deal of overlap between all of these forms, so, whilst it is useful to separate the various types of the disease, in practice it is not always possible to be so specific. This is particularly true as the disease progresses.

The first signs of MND vary from person to person. Some people we talked to first noticed weakness or stiffness in their legs or feet, while others found their arms or hands were affected. These symptoms are typical of the most common form of MND, amyotrophic lateral sclerosis (ALS). For some people the first sign anything was wrong was weakness in the muscles around their throat and mouth, leading to problems with speaking or swallowing (known as bulbar onset MND). A few people noticed breathing problems early on. Occasionally people developed symptoms in different parts of the body at the same time, and a few also experienced mood swings or emotional changes ('emotional lability'). Sometimes after diagnosis people looked back and realised they had other symptoms too which at the time they had not really noticed or put down to some other cause. The MND Association provides information about symptoms and types of MND.

Symptoms in arms and hands

Some people had first noticed weakness or stiffness in their arms or hands. Sometimes this was accompanied by aching or cramps. (MND is generally not a painful condition, but muscle stiffness can be uncomfortable at times). One man who was later diagnosed with progressive muscular atrophy (PMA) had 'twinges' in his shoulder after playing badminton and his physio noticed he had some muscle loss. (PMA is one form of MND - see footnote below about less common forms of MND). Looking back, another man had felt 'pins and needles' in his shoulder before any other symptoms appeared, although it was leg weakness which prompted him to go to the doctor.

Fine hand movements such as turning a key or picking up small objects were difficult for some people. At first people were unsure what was happening and some put their symptoms down to being clumsy or feeling stressed. 

Some people could feel a flickering in the muscles they could not control (called 'fasciculations'). 

Symptoms in the legs and feet

Several people first noticed problems with their legs or feet. They said their legs felt strangely 'weak', 'floppy' or 'numb', or 'stiff', 'aching' or 'cramping'. Walking, exercising or climbing stairs became increasingly hard, and often people started to trip or fall. Again, they could not work out what was happening and some put it down to being clumsy or unfit, feeling stressed, getting older or having strained a muscle. 

Some people developed 'foot drop', where one foot drags or drops and gets in the way of walking. This could be especially noticeable for people who enjoyed sports, golf or fitness training, including one woman with PMA.

One woman described rapid muscle contractions in her stomach and legs, almost like 'having butterflies'. (People with a diagnosis of primary lateral sclerosis or PLS sometimes experience muscle contractions, known as 'clonus'. See footnote below on less common types of diagnosis). 

Symptoms with speech, swallowing and breathing 

Some people we interviewed noticed their first symptoms around their throat or mouth. This is known as 'bulbar onset' MND and affects around 25% of people with MND. (Some people with PLS also have bulbar symptoms first - see footnote on less common types of diagnosis below). 

Many people in this group experienced slurred speech; some noticed it themselves before anyone else did, while in some cases other family members first spotted something was wrong. Other people often thought that the person was drunk. 

People who experienced speech problems often wondered if they had had a stroke, or some sort of brain tumour, or a damaged nerve. Most found their symptoms crept up on them gradually, but one woman described sudden onset speech problems after she had been exercising. Again, her boss thought she had been drinking.

A few people also had difficulties coughing or breathing, or had choking fits. One woman said, “I had a weird thing where I woke and I couldn't breathe in or out… and that lasted about twenty minutes and made the most ghastly noise.” Shallow breathing can result in tiredness even if the person has not noticed being short of breath.

A man whose brother had died of MND did not realise at first his coughing fits might be connected, as his brother's symptoms had been so different.


Footnote: less common types of MND diagnosis
A few people diagnosed with MND will be told they have an unusual form of the condition such as PLS (primary lateral sclerosis) or PMA (progressive muscular atrophy). PLS affects only the upper motor neurones, and PMA only the lower motor neurones. The first symptoms of these forms are very similar to other more common forms of the condition, so in the early stages it can be difficult to distinguish them. In PLS, legs, hands or speech can be affected as well as sense of steadiness in walking, and in PMA it is usually hands or legs. People with these forms generally live longer than people with more common forms of MND, and lifespan in PLS may be normal, but they share many of the same problems of increasing disability. See our resources section for links to further information about the symptoms and progression of these forms. 

Last reviewed May 2012.
Last updated May 2012.

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