Research released by MS Australia in December 2025 revealed that there has been a significant increase in the number of people living with MS in Australia over the last three years. There were 37,756 people living with MS in Australia in 2024, an increase of 4,421 people since 2021 (from 33,335 people). Since the first MS prevalence report in 2010, the number of Australians living with MS has risen by 77.4%, while prevalence has risen 45.5%, now at 139.2 per 100,000 Australians (from 95.6 per 100,000 in 2010).
An increase in the number of Australians living with MS corresponds with an increase in the total costs for people with MS in Australia, with total costs for all people with MS in Australia increased from $2.449 billion in 2021 to $3.004 billion in 2024.
MS Australia’s 2025-26 pre-budget submission has four asks that will improve the lives of people living with MS and reduce the economic impact of MS on the Australian health, disability, social services and aged care systems:
Research to prevent people from developing MS, improve early diagnosis and develop effective treatments and interventions to slow or prevent disease progression through funding a National MS Biobank, a Neurological Mission and improved neurological data.
These case studies show how delays in MS diagnosis affect people and why investment in research and neurological data is needed to support earlier diagnosis and intervention.
Sarah lives with MS and is a member of the MS Australia Lived Experience Expert Panel
I vividly recall Christmas Eve 2013. Three excited kids. Check. Three stockings beside beds. Check. One tingly left arm. Whoa, what’s that about!? One sleepless night due to frantic worrying about early onset cardiac disease. One trip to the emergency room. One cursory work-up by an under-enthused EMT registrar who diagnosed ‘stress’. And finally, one very delayed Christmas dinner, comforted by the notion there was no imminent chance of a heart attack. Whew, I thought, I’ve dodged a bullet. Oh my, how wrong I was.
Over the next months the sensory symptoms didn’t abate and were compounded by neuromuscular pain and relentless accompanying fatigue. Desperate for some indicator of what was causing these symptoms, I engaged with several medical specialists and was launched into an abyss of medical prodding and probing, investigations and interrogations. As I began that free fall into what would become a seemingly endless onslaught of specialist appointments, each resulting in ever increasing emotional turmoil and generating far more questions than answers, I had no idea that it would take an epic 12 months to land on the solid ground of a definite diagnosis.
Blood tests, MRIs, a lumbar puncture, and nerve conduction tests—all yielded bafflingly inconclusive results. An increasingly varied suite of theoretical potential diagnoses – spanning the gamut from a brain tumor to schizophrenia, lupus to syphilis – were all explored and systematically ruled out. Months went by and I remained in a sort of medical purgatory – euphemistically referred to by my doctors as ‘it could be nothing’. Because even though MS remained defiantly on the list of not-yet-excluded hypotheses, one demyelination attack does not equate definitionally to the multiple that MS draws its name from.
And yet, although I was ‘clearly not fine’, I was also ‘not visibly unwell’ either. Things settled down for a few months until another relapse and then after yet another MRI (I was half-expecting the kitchen cutlery to start sticking to me). After delving into yet more diagnostic rabbit holes, I was finally, at the age of 34, proclaimed to have MS. And with the diagnosis came relief – an end to the disquieting uncertainty of ‘what is wrong with me?’ – and the promise of disease-modifying therapies to stall neurodegeneration.
Fast-forward ten years to now, and I’m living comfortably without major disabilities, under the care of a neurologist I trust. It was without a doubt a rocky road to diagnosis, but I consider myself fortunate that it was caught relatively early, and I’ve experienced no major relapses. My hope is that with the improvements over the years in technology and training, others may experience a much less fraught diagnosis journey.
Sienna lives with MS and is a member of the MS Australia Lived Experience Expert Panel
My journey with MS began when I was just six years old. It started with strange visual disturbances – flashing lights and dots that clouded my world. What followed was a whirlwind of doctor’s appointments and neurological tests, but at nine, the doctors concluded it was psychological.
For four years, until I was nine years old, I underwent behavioural therapy, being told it was all in my head. Despite the support of my paediatrician, the trauma of being dismissed by medical professionals made me keep my struggles to myself, fearing I wouldn’t be believed.
At thirteen, I lost all feeling in my right hand, a stark reminder that something was seriously wrong. Yet, once again, a neurologist told me it was psychological. For years, I was unable to write or use my hand as I wasn’t receiving the right treatment.
Then, at fourteen, numbness crept from my head to my toes. This was the moment I knew it was not in my head. Another trip to the neurologist yielded little hope until an MRI uncovered the truth – multiple lesions on my brain and spine, finally explaining my symptoms.
The whole diagnosis process was not easy for me, as I was young, and many doctors didn’t believe me. It took eight long years to receive a diagnosis, and throughout my journey, my mum and family were my biggest support system and they never stopped fighting for me, pushing for better care and accommodations. But I also learned the importance of self-advocacy – of trusting myself and knowing my body.
Finding medical professionals – such as a neurologist I could trust and be comfortable with, and MS nurses who I can share my concerns with – has been critical. MS has impacted every aspect of my life – friendships, education, even my ability to work.
The lack of awareness and support for young people with MS is staggering, and I’m determined to change that. No one should face the hurdles I did, especially in school. The education system has very poor special considerations for children with disabilities, and I believe there is much that needs to be changed.
Luckily for me, I had parents and a school who fought for me to get better considerations, which were still not good enough. However, for other children with MS, I know they do not have these supports, making them unable to complete school. For me, helping others with MS through school is very important as I know the struggles I faced, which nearly led me to drop out.
Now, I strive to be a voice for others with MS, ensuring they receive the understanding and assistance they deserve. It’s a journey filled with challenges, but with the love of my family and the support of the MS community, I know we can make a difference.
Improved access to MS Nurses across Australia for people living with MS through additional nurses, a MS Nurses Pilot Project and the development of a MS Nursing microcredential.
Tim is a MS Nurse Practitioner and a member of the MS Australia MS Nurses Work Group
Tim was one of the first MS Specialist Nurses and the first MS Nurse Practitioner in Australia. He works as a MS Nurse Practitioner across two Queensland hospitals with his MS nurse-led and patient-focused clinics.
Tim provides nursing services to patients from the time of diagnosis and across their life span and has worked with some patients for over 20 years. Tim works with nearly 1,000 MS patients across two diverse hospital districts providing individualised care. He works with a range of other clinicians including Neurologists, GPs, nurses and allied health.
As a nurse practitioner Tim provides patients with a wide range of services including assessing, planning and treating MS symptoms, prescribing (some) symptomatic therapies and ordering pathology and some radiology.
Tim further contributes to the work of MS nurses through support, mentoring and education for other MS nurses and pioneering the development of web-based education for people living with MS.
A better NDIS for people living with MS through improved NDIS pricing, a better NDIA workforce, improved planning and supports, a better disability sector workforce, housing and living supports and assistive technology. Improved income support, poverty measures and implementing the recommendations of the Disability Royal Commission.
John* lives with MS and is an NDIS participant whose goals focus on continuing in employment and study, keeping his mobility, and slowing the impact of his condition so he can stay healthy and independent. John works in construction, which is physical work, so maintaining his strength is essential for him to stay employed. He works half days on site and half days in the office because his mobility has declined. The agreed approach was to work with allied health to build a targeted plan to improve his mobility, strength, and endurance.
John was approved for a 12-month NDIS plan in 2024 with a total budget of $9,300, with all funds allocated to Improved Daily Living Skills.
In May 2025, John made a plan change request so that he could submit an occupational therapy assessment and physiotherapy report detailing an increased need for therapy supports. However, an administrative error by the NDIA resulted in the plan change request being closed before the documentation was submitted and considered. As a result, when John had a new plan approved in November 2025 that did not take into consideration his needs
John’s new plan has increased marginally to $21,700 over 24 months and does not take into consideration the need for more therapy supports. Additionally, some of the current therapy supports that were assisting John have been replaced by a therapy assistant. The evidence-based and individualised support provided by a qualified allied health professional cannot be replaced by a therapy assistant. A request for a psychologist was rejected based on the support not meeting NDIS criteria, because ‘another government service is responsible for providing this’. This rationale conflicts with the approved NDIS goals in John’s plan.
John received an NDIS decision letter that contradicts the funding details in the plan’s budget breakdown and states that ‘therapy supports from Improved daily living skills have not been included’.
Without the increase to John’s therapy supports, he cannot maintain his mobility, strength and endurance, and this will impact his ability to maintain employment and stay healthy and independent.
*John’s name has been changed to protect his identity
Janine lives with MS and is a member of the MS Australia Lived Experience Expert Panel
Janine is a Taekwondo Paralympic athlete who has won four World Championships, and at the Tokyo 2020 Paralympic Games won Australia’s first-ever Paralympic medal in the sport of Taekwondo. She now travels the world assessing para-athletes to determine if they meet classification requirements. She is also a mentor, coach and inspirational speaker.
Janine requested more capacity-building funds for therapy supports to help her maintain her independence. Janine was contacted by an NDIA planner who had a 10-minute conversation with her and asked her a few questions about her plan review. She was told during this phone call that her therapy supports would be increased.
When Janine received her new plan, the NDIA had reduced her physiotherapy supports from two hours per week to 12 hours a year. She was also given 52 hours a year for a therapy assistant to supervise a therapy program or accompany her to the gym, and a support worker to assist with daily activities, such as grocery shopping. The evidence-based and individualised support provided by a qualified allied health professional cannot be replaced by a therapy assistant or support worker.
There was no formal planning session with Janine prior to her being sent this plan. The NDIA planner made assumptions about her needs and individual goals. Janine wants to be able to independently undertake daily tasks and not rely on a support worker, all of which was clearly stated in Janine’s NDIS goals.
The lack of access to allied health professionals has already resulted in Janine sustaining injuries after a heavy fall on Boxing Day. The changes in Janine’s plan will result in a further reduction in her independence, decreased quality of life, increased mental health issues and ultimately reliance on higher support needs due to the progression of her MS.
“My new NDIS plan feels generic, as if it was copied from someone else rather than made for me. I’m frustrated because I put a lot of time and effort into preparing thorough evidence and reports for my plan review, yet it seems like none of it was considered. Now, I have an NDIS plan that doesn’t suit my needs and leaves me worse off.”
Improved access for the 220,000 older Australians waiting for Support at Home Packages and assessments and ensuring equity of services and funding for older people living with disability.
This case study highlights gaps in aged care supports for people living with progressive neurological conditions and the need for improved funding support.
Susan is an older person who lives with MS and is ineligible for a NDIS package. After her experiences navigating the aged care system, she relinquished her home care package.
My experience with My Aged Care as a person living with MS was deeply frustrating and ultimately harmful to my wellbeing. MS is a progressive condition, and it important to manage your symptoms which requires access to specialised activities, therapies and assistive supports that maintain strength, independence and daily functioning. However, My Aged Care is built for frailty and age-related decline, not progressive disability.
My goals – to stay physically strong, remain active in the community, continue voluntary work and preserve independence – align with the NDIS, but the aged care system could not support them. My package was means-tested, capped, and unable to fund the disability-specific supports I rely on.
The most critical therapy for me is an intensive neuro-exercise program delivered three times a week. It helps maintain muscle strength, mobility, hand function and significantly slows deterioration. Yet My Aged Care had no mechanism to include this evidence-based therapy in my plan.
I also rely on remedial massage to manage spasms, pain, gait problems and muscle overuse. Although my GP referred me to an MS-specialist therapist, the system required me to use a physiotherapy-aligned massage provider with rigid session caps. The therapist I was permitted to use had no understanding of MS and the treatment made me feel worse.
Supports for meal preparation were similarly ineffective. Because my fatigue, weakness and dexterity issues make cooking dangerous, I needed reliable help – yet constant changes in workers, arbitrary participation rules and lack of cooking skills made the service stressful and unhelpful.
Also, half my funding went to management fees, yet I received no real plan management. After a year, it became clear that My Aged Care restricted my choices, limited essential supports, and consumed my resources. I surrendered my package and now self-fund supports simply to regain control and dignity.
