Receiving a diagnosis of ALS/MND is a life-changing moment. This page explains what the diagnostic process typically involves and what people can expect in terms of how the disease progresses. It is intended as a general introduction. A neurologist or specialist will be the most important source of information for any individual situation.
How ALS/MND is diagnosed
There is no single test that confirms ALS/MND. Diagnosis is a process, and it can take time. A neurologist will typically conduct a series of assessments to identify signs of ALS/MND and to rule out other conditions that can cause similar symptoms.
The diagnostic process may include:
- A detailed neurological examination to assess muscle strength, reflexes, coordination, and speech
- Electromyography (EMG) and nerve conduction studies, which measure the electrical activity of muscles and nerves
- MRI scans, to rule out other causes of symptoms such as spinal cord compression or stroke
- Blood and urine tests, to exclude other conditions
- In some cases, a muscle or nerve biopsy, or a lumbar puncture
Because ALS/MND shares some features with other neurological conditions, reaching a confirmed diagnosis can require multiple appointments and tests over a period of weeks or months. A second opinion from another specialist is a reasonable step, and many people find it helpful.
Once a diagnosis is confirmed, care is typically transferred to, or coordinated with, a multidisciplinary team. This team may include neurologists, physiotherapists, occupational therapists, speech therapists, respiratory specialists, dietitians, social workers, and others. For more on the care team and what it involves, see the Clinical Care section.
How ALS/MND progresses
ALS/MND affects each person differently. The rate and pattern of progression vary from one individual to the next, depending on factors such as which muscles are affected first, age at diagnosis, and overall health.
In most cases, ALS/MND begins with weakness or changes in one area — such as a hand, foot, or the muscles used for speaking or swallowing — and spreads over time to other parts of the body. The muscles that control breathing are typically affected as the disease progresses.
Cognitive and behavioural changes can also occur in some people living with ALS/MND, including difficulties with memory, language, or behaviour. These changes are more common in people who also have frontotemporal dementia (FTD), which overlaps with ALS/MND in a proportion of cases.
Because progression is variable, it is difficult to make precise predictions for any individual. A specialist or multidisciplinary care team is best placed to discuss what to expect based on a person’s specific situation.
Finding support after diagnosis
A diagnosis of ALS/MND affects not only the person diagnosed, but also family members and caregivers. Finding the right support early can make a significant difference.
The Alliance’s member associations provide support, information, and services to people living with ALS/MND and their families around the world. To find an association in your region, visit the Member Association directory.
Note: This page provides general information only. It is not a substitute for medical advice. Anyone with concerns about their symptoms or diagnosis should speak with a qualified healthcare professional.