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Amyotrophic lateral sclerosis (ALS)

See your GP if you experience the initial symptoms of motor neurone disease, such as a weakened grip or weakness in your shoulder, ankle or hip.

See your GP if you experience the initial symptoms of motor neurone disease, such as a progressive, usually painless, weakness of grip.

After an initial examination, they may refer you to a brain and nervous system specialist (a neurologist) for a further opinion and possibly tests.

Diagnosing motor neurone disease can be difficult during the condition's initial stages because many of the early symptoms can be caused by other more common health conditions such as:

  • a trapped nerve – wear and tear of the bones in the spine can sometimes cause nerves to become trapped and compressed under the spine
  • peripheral neuropathy – where part of the nervous system becomes damaged by another health condition, most commonly type 2 diabetes

Initial testing

Motor neurone disease is usually diagnosed by a neurologist based on the symptoms and a physical examination.

There's no single test for motor neurone disease, but the diagnosis is often obvious from a person’s symptoms and physical examination by a neurologist. Various tests may be used to rule out other possible causes of the person's symptoms if they seem likely. Tests may include:

  • blood tests – these can be used for several reasons, such as checking that certain organs, such as your thyroid, are working normally, or to look for a marker of muscle weakness (creatinine kinase)
  • magnetic resonance imaging (MRI) scan – to give a detailed image of the inside of your brain and spinal cord
  • electromyography (EMG) – measures the electrical activity in your muscles, which shows how well your motor neurones are working and connecting to the muscles
  • nerve conduction test – similar to an EMG but measures how quickly your nerves can conduct an electrical signal
  • lumbar puncture – a sample of spinal fluid may be removed for testing to exclude an inflammatory nerve condition 
  • muscle biopsy – in rare cases, a small sample of muscle may be removed for testing to determine whether the problem lies in the muscles or nerves

Confirming the diagnosis

There are many reasons why there may be delays in diagnosis. It may be that the initial symptoms aren't thought to be serious, or they're not recognised as being related to the nervous system so a neurologist isn't initially consulted.

Sometimes, the diagnosis of motor neurone disease is clear without the need for further tests. However, confirming a diagnosis can sometimes be time-consuming even for an experienced neurologist, who occasionally needs a period of observation to be sure, particularly in cases where the condition progresses slowly. Motor neurone disease can only be diagnosed if the symptoms are clearly getting worse (progressive).

Receiving the diagnosis

Being told you have motor neurone disease can be emotionally devastating and the news can be difficult to take in at first. Many people diagnosed with the condition go through the classic stages of the grieving process. These are:

  • denial – you may initially disbelieve the diagnosis and think there's nothing wrong with you or that your doctor has missed another diagnosis
  • anger – you may feel angry towards friends, family or medical staff, particularly if you feel that the diagnosis has been unduly delayed
  • bargaining – people with terminal conditions sometimes try to "bargain" with their doctors, asking for any sort of treatment that can prolong their life
  • depression – you may lose interest in life and feel that your situation is hopeless
  • acceptance – you come to terms with the diagnosis, the feelings of depression pass, and you begin to plan the rest of your life

If you've been diagnosed with motor neurone disease, talking to a counsellor or a trained clinical psychologist may help combat feelings of depression and anxiety.

It's not unusual to have thoughts of taking your own life, although very few people with motor neurone disease go on to do this. You shouldn't be concerned about discussing any such thoughts with your doctor. 

Taking antidepressants or medicines to reduce anxiety may also help as you move through the stages of the grieving process. Your care team will be able to advise you about this.

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