Multiple Sclerosis New Zealand (MSNZ) is highlighting the need for better-connected treatment pathways and earlier awareness of symptoms, with evidence showing some people are experiencing symptoms for up to a decade before receiving a formal diagnosis.
The call comes as MSNZ launches its 2026 MS Awareness Week campaign, Time Matters in MS, highlighting the importance of recognising possible signs of the condition and ensuring people can access timely specialist assessment, investigation and care.
Over 5000 people in New Zealand live with multiple sclerosis. Research published last year showed a 67% increase in MS incidence in the past two decades. Yet despite this increase, many still report significant struggles getting diagnosed. The average gap between a person’s first MS symptom and diagnosis is four and a half years, but some are waiting far longer.
MSNZ General Manager Amanda Rose says such delays can have serious consequences for people living with a condition.
“Today, MS can be well-managed with treatment but this relies on timely diagnosis, which starts with greater recognition in primary care, ophthalmology and emergency care, as well as a greater investment in neurological services and MRI scanning,” Rose says.
Many MS symptoms can be non-specific and synonymous with a plethora of other conditions – some serious and life-threatening. MSNZ says that timely specialist review is essential, as delays for people with MS can mean increased disease progression, worse outcomes, and often preventable and irreversible disability.
“The longstanding, chronic shortage of neurologists in Aotearoa has created waiting times of 6-18 months in some parts of the motu. This isn’t just an MS issue but a neurological one,” Rose explains.
Adding to this problem, recent research suggests the challenges may be more damaging and complex than previously understood.
A major study published in JAMA Network Open last year examined healthcare use among 2,038 people with MS in British Columbia, Canada. Researchers found that people who went on to develop MS were using healthcare services more frequently from as early as 14 to 15 years before their clinically diagnosed MS symptom onset.
The findings suggest MS may manifest much earlier in the body than previously recognised, with subtle or non-specific symptoms preceding more recognisable neurological symptoms.
For MSNZ, the research reinforces the importance of greater awareness among both health professionals and the public of the many ways MS can present.
“No two people will experience MS or the associated symptoms in the same way,” Rose says.
“This often makes spotting the signs for diagnosis difficult. Treating and managing MS is also unique to the person, adding to the complexity.”
MSNZ says changes in vision can be an early signal, including blurred or double vision, pain when moving the eyes or colours appearing faded. Other possible symptoms include numbness, tingling, unusual sensitivity, weakness and problems with movement or balance.
“While we can educate people on identifying concerning changes and to seek advice, the fact remains that many symptoms are put down to stress, busy lives, hormonal changes or ageing, with people missing out on critical windows of opportunity,” Rose explains.
MSNZ, in consultation with leading specialist neurologists, has recently written to Pharmac requesting an update of the diagnostic criteria for MS based on updated international guidelines. This change could accelerate the diagnostic process and allow patients to begin their treatment sooner.
The organisation is also helping to educate the public on the early signs of MS, whilst advocating for greater neurological resourcing and improved knowledge among primary care providers.
MS can be complex and lengthy to diagnose. For this process to work effectively every part of the journey needs to be optimised – from recognising potential symptoms, access to primary care for support and referral, to timely specialist review and investigation. Each step of the pathway is critical to providing people with timely assessment, accurate diagnosis, and early access to treatment.
“We’re advocating hard for better care, faster diagnosis, access to world-class treatments and a stronger voice for the MS community in shaping policy for the future,” Amanda Rose says.
Last Updated September 16, 2026