Motor neurone disease (MND) is a condition in which the nerve cells that control muscles stop working. It causes weakness that gets worse over months or years. The NHS says it is usually life-shortening and there is no cure, but treatment can ease symptoms. Amyotrophic lateral sclerosis (ALS) is the most common type. In Ireland and the UK the two names are often used for the same thing.
Early signs include a weak grip, tripping, and twitches or cramps that don't settle. Most twitching is harmless. What matters is weakness that keeps getting worse. Diagnosis is made by a neurologist. Care comes from a specialist team, and in Ireland that service is centred on Beaumont Hospital in Dublin. Two medicines are licensed: riluzole for ALS, and tofersen for a rare inherited form.
Motor neurones carry signals from the brain and spinal cord to the muscles. In MND they gradually stop working. Muscles then weaken and waste.
The NHS lists four main types:
The HSE's ALS care pathway gives Irish figures. About 72% of people first notice limb symptoms. About 28% start with speech or swallowing problems. The Irish Motor Neurone Disease Association (IMNDA) says it supports more than 470 people living with MND in Ireland.
MND can affect thinking and behaviour too, not only muscles. NICE notes it may first appear as behaviour change, emotional lability (crying or laughing that is hard to control), or frontotemporal dementia. The HSE pathway says about 15% of people meet the criteria for frontotemporal dementia. Milder cognitive or behavioural changes are more common.
The NHS lists these early symptoms:
It usually affects people over 50, but can start at any adult age. See a GP if you have trouble gripping, weakness in your legs or feet, or twitches or cramps that keep happening, last a long time or don't go away.
Most people who search for MND have twitching and normal strength. That is a very different picture. Our guide to muscle twitching explains why.
There is no single test. A neurologist puts together your history, an examination and tests, and rules out other conditions. NICE says a GP who suspects MND should refer without delay, and name the possible diagnosis in the referral letter.
Tests usually include:
MND can be hard to confirm early. The NHS says it can usually be confirmed as symptoms progress. NICE says the diagnosis should be given by a consultant neurologist with experience of MND, with a follow-up appointment within 4 weeks.
Genes and family history. Most people with MND have no family history. The NHS says about 1 in 10 do. In Ireland, the HSE pathway puts familial ALS at 10% to 15%. Half of familial cases in Ireland are linked to a change in a gene called C9orf72. The pathway notes that SOD1 and TDP43 gene changes are not common in the Irish population. That matters for tofersen, below. Genetic testing and counselling are part of the Irish care pathway.
Treatment aims to slow ALS a little, control symptoms and keep you as well and independent as possible.
Riluzole. Riluzole is licensed for the ALS form of MND only. In three trials with 1,282 patients, the European Medicines Agency reports that people taking 100 mg a day lived about 2 months longer on average over 18 months than those on placebo. It was not more effective than placebo in late-stage ALS. It cannot be used by people with liver disease, or during pregnancy or breastfeeding.
That is a modest benefit. It is still the main disease-modifying medicine for most people. NICE recommends it for ALS, and the HSE care pathway lists it as standard.
Tofersen (Qalsody). Tofersen is for adults with ALS caused by a change in the SOD1 gene. That is about 2% of people with ALS, according to the EMA. It is a gene-targeted medicine that reduces production of the faulty SOD1 protein. It is given by lumbar puncture (an injection into the lower spine): three doses two weeks apart, then every four weeks.
The evidence is limited, and regulators say so:
The EMA authorised it under "exceptional circumstances" because the disease is so rare. The company must collect more long-term data, and patients are followed in a registry. In the US, the FDA gave it accelerated approval based on the reduction in neurofilament light chain, with a confirmatory trial ongoing.
The UK regulator lists headache, back pain and tiredness as common side effects. Rarely, inflammation of the spinal cord or optic nerve, or raised pressure around the brain, have occurred.
Other medicines. Edaravone is not authorised in the EU. The company withdrew its application to the EMA in 2019.
Checked 3 November 2026.
Sources: EMA, Qalsody, MHRA, NICE ID3767, FDA, EMA, Radicava. We searched the NCPE website for tofersen and Qalsody on 3 November 2026 and found no entry.
If you have SOD1-ALS and live in Ireland or the UK, ask your neurologist what access routes exist. Do not assume it is unavailable, or that it is funded.
Clinical trials. On 3 November 2026, ClinicalTrials.gov listed 4 ALS studies recruiting at Irish sites and 9 at UK sites. These include drug trials and the UK's MND-SMART platform trial. Trials are research, not treatment. Your neurologist can tell you whether any fit.
MND care works best from a specialist team that sees you regularly. NICE recommends a multidisciplinary clinic, usually every 2 to 3 months. The Irish pathway suggests outpatient reviews every 6 to 8 weeks. The team may include a neurologist, specialist nurse, physiotherapist, occupational therapist, speech and language therapist, dietitian and palliative care specialist.
Key areas of care:
IMNDA support (Ireland). IMNDA nurses visit people at home and work with community teams. The association helps with equipment, counselling, home care hours and night nursing. Freefone 1800 403 403. In the UK, the MND Association helpline is 0808 802 6262.
MND can affect speech and, for some people, thinking. NICE says planning ahead should be offered at diagnosis and again at key points, such as before breathing support or a feeding tube. It helps to make decisions while you can communicate them easily.
In Ireland, the main tools are:
In England and Wales, the equivalents are an advance decision to refuse treatment and a lasting power of attorney.
Money and medical cards (Ireland). MND is not on the HSE's Long-Term Illness Scheme list. But the HSE gives a medical card without a means test to people with a terminal illness who have been told they have 24 months or less to live. Your consultant applies for it. Family members who provide care may qualify for Carer's Allowance.
If you are struggling. A diagnosis like this is hard for everyone involved. Talk to your care team or GP. You can also call Samaritans on 116 123 (Ireland and UK) or text 50808 (Ireland). In an emergency, call 112 or 999.
Does muscle twitching mean I have MND? Almost always, no. Twitching with normal strength is common and usually harmless. MND causes weakness that gets worse. If you have weakness, trouble gripping or tripping, see your GP.
How long do people live with MND? It varies a lot. The HSE pathway says respiratory failure generally develops within 2 to 5 years, but some people live much longer. Your care team can discuss what is likely for you, if you want to know.
Can I get tofersen in Ireland? Tofersen is authorised in the EU, but we found no HSE reimbursement decision. It is only for SOD1-ALS, which is uncommon in Ireland. Ask your neurologist about genetic testing and any access routes.
Is MND inherited? Usually not. About 1 in 10 people have a family history. Genetic counselling can help families understand their risk.
This article is general information, not medical advice. Talk to your GP or neurologist about your own situation.
Reviewed by: Proco Team
Last updated: November 2026