Motor neurone disease (MND) has been particularly visible in Australia in 2026.

On May 20, NRL player Jai Arrow shared the news that he had been diagnosed with MND, and was retiring from rugby league, aged just 30.

Less than a week after Jai’s announcement, Neale Daniher died. The much-loved former AFL player and founder of FightMND had lived with MND for over a decade, very much in the public eye.

In September, former Wallaby player Nathan Charles shared that he, too, had been diagnosed with MND. It’s worth noting that while there is evidence of an association between contacts sports, especially where repeated head impacts are common, and increased risk of MND, studies so far have not established a causal link.

Regardless, recent events have brought renewed attention to this life-limiting disease, but greater public awareness does not necessarily translate into earlier diagnosis.

In Australia, diagnosis commonly takes around a year from symptom onset, although this varies considerably.

GPs are often the first point of contact, but early symptoms can resemble those of more common conditions, making MND difficult to recognise during an initial consultation.

Why MND can be difficult to diagnose

Diagnosing MND can be complex because there is no single test to confirm the disease. Assessment by a neurologist is an important step towards diagnosis. A neurologist reviews symptoms and conducts tests to help identify MND and rule out other conditions.

However, people living with MND may be referred to other specialists before seeing a neurologist. A 2024 UK retrospective study found that 35% of patients diagnosed with MND had seen two or more non-neurology specialists before referral to a neurologist. This was more common among patients whose first symptoms affected speech or swallowing, with 49% having seen two or more non-neurology specialists.

The study found that numerous specialist referrals were associated with longer delays to neurological assessment, highlighting the importance of timely access to a neurologist when MND is a possibility.

GPs do not need to establish an MND diagnosis before referring. Recognising when symptoms progress, new neurological features emerge or an initial diagnosis no longer explains the presentation can help identify when referral to a neurologist is needed.

Patterns that may point to MND

A patient who begins dropping objects may believe it is due to a hand problem. Another may notice they are tripping more frequently, while someone else develops changes to their speech or swallowing.

Individually, these symptoms have several possible explanations. However, when they progress or new neurological symptoms emerge, MND warrants consideration.

Clinical features that may indicate MND:

• Limb symptoms: painless, progressive weakness, often beginning in one hand, arm or foot and affecting one side more than the other. Other features include loss of dexterity, foot drop, muscle wasting, twitching (fasciculations) and cramps.
• Speech and swallowing difficulties (bulbar symptoms): slurred, quiet or altered speech, difficulty swallowing – especially if this is harder with thin liquids (such as water) but soft food goes down okay – excessive saliva or choking sensations.
• Breathing difficulties (respiratory symptoms): Less commonly an early feature, these may include breathlessness, morning headaches, excessive daytime sleepiness, unrefreshing sleep or a weak cough.

Symptoms may begin in one area and gradually worsen or affect other parts of the body. Changes in thinking, behaviour or personality can also occur alongside physical symptoms.

Significant numbness or tingling in the arms or legs, fasciculations without weakness, double vision, and changes in bladder or bowel control are not typical of MND. Symptoms that improve over time may also suggest another condition.

PRACTICE TIP: Some questions worth considering include:

• Is muscle weakness progressing and/or affecting everyday activities?
• Have symptoms appeared in another part of the body?
• Are symptoms progressing in a way that would not be expected with the initial diagnosis?

A timely, well-informed referral matters

When MND is suspected, timely referral to a neurologist experienced in diagnosing the condition is important. MND Australia recommends stating suspected MND in the referral.

How a possible MND diagnosis and referral to a neurologist is discussed with patients also matters, as raising the possibility of MND can cause significant distress.

GPs can be open about their clinical concerns while acknowledging that symptoms may have other explanations and that assessment by a neurologist is needed to establish a diagnosis. This is particularly important when symptoms are less typical of MND (eg. isolated fasciculations without weakness or functional impairment).

Australian state health guidelines emphasise the importance of documentation when referring patients for neurological assessment. For MND, useful information includes:

• Reason for referral: state that MND is a possible diagnosis and explain why neurological assessment is needed.
• Onset and progression: when symptoms began, what has changed and how quickly.
• Functional impact: changes to walking, hand function, speech, swallowing or breathing.
• Examination findings: distribution of weakness, muscle wasting, fasciculations, reflexes and sensory findings, where assessed.
• Clinical context: relevant medical history, family history, investigations and alternative diagnoses considered.

Early referral can help people access neurological assessment without unnecessary delays, even when a diagnosis remains uncertain or investigations are ongoing.

More urgent assessment may be needed when swallowing or breathing difficulties are worsening rapidly.

Where general practice fits into ongoing care

Following an MND diagnosis, specialist MND clinics can provide multidisciplinary care, involving health professionals such as neurologists, respiratory specialists, occupational therapists, speech pathologists and dietitians.

However, access to multi-disciplinary and specialist MND services varies across Australia, particularly in rural and regional areas. Where these services are less accessible, GPs may play a greater role in coordinating care, alongside managing other health conditions and supporting the wellbeing of patients and their families.

State MND Associations are another important source of support. They can help people living with MND and their families connect with local services, equipment, information about funding support and practical assistance.

Key takeaways

• Look for progressive weakness. Painless weakness, loss of dexterity, foot drop, muscle wasting or twitching may indicate MND.
• Recognise speech, swallowing and breathing changes. Slurred speech, swallowing difficulties or breathlessness may be signs of MND.
• Consider symptom progression. Weakness that worsens, spreads or does not fit the initial diagnosis warrants further assessment.
• Refer early, even when uncertain. State possible MND in the neurology referral. Rapidly worsening swallowing or breathing difficulties may require urgent assessment.
• Provide a clear referral. Include when symptoms began, how they have progressed, their impact on daily activities and relevant examination findings.

Quick links for GPs: recognition, referral and support resources

The following resources can help GPs recognise possible signs of MND, refer patients for neurological assessment, and connect people with ongoing care and support:

MND Australia – Information for GPs: A collection of resources covering recognition, diagnosis, referral and ongoing care.

Could this be motor neurone disease? GP diagnostic tool: A quick-reference guide highlighting clinical features that may suggest MND.

RACE to Diagnosis: An education resource supporting earlier recognition and referral

MND neurologists across Australia: A state-by-state directory of neurologists with experience in diagnosing and managing MND, including public and private services.

Specialist MND clinics across Australia: Contact details for multidisciplinary MND clinics and services.

State MND Associations: Contacts for local information, practical assistance and support services.

This article was clinically reviewed by Dr Antony Winkel, Director of Neurosciences, Sunshine Coast Health; Associate Professor, Griffith University.

It was written by Barb Corapi, Knowledge Translation Specialist, MND Australia