Living with Progressive MS

Living with progressive MS – in their own words

18 October, 2018
  • New Australian research has highlighted the need for early intervention in progressive MS.
  • Using the Australian MS Longitudinal Study to collect patients’ perspectives about their own disease, researchers have shown that symptoms were more severe in people with the progressive-onset disease compared to people with relapsing-onset MS.
  • Differences between the two patient groups were more marked earlier in the disease but reduced as time went on.

New Australian research has highlighted the need for early intervention in progressive MS. While many treatments are now available for the relapsing form of MS, only one treatment has just recently been approved for use in people with the progressive disease. Unfortunately, despite best attempts, advancements for people with progressive MS have been limited especially in comparison to people with relapsing MS. Now a new study recently published in the European Journal of Neurology aims to examine the difference in the everyday life of people with different types of MS.

Researchers from the Menzies Institute for Medical Research at the University of Tasmania asked people who started with progressive MS about their perspectives of their own disease and compared their responses to people who started out with a relapsing form of MS. They used data from the Australian MS Longitudinal Study (AMSLS), an ongoing research platform of MS Research Australia. The AMSLS has been following a large group of people with MS from Australia since 2001 and conducts annual surveys about living with MS.

The researchers asked 1,985 people with MS about a range of factors related to disability, progression and quality of life. They also asked about peoples’ experiences of different MS symptoms such as fatigue, difficulty walking, pain, balance, issues with bladder or bowel and anxiety and depression. Patients rated their experience on validated research scales (such as the Fatigue Severity Scale) or on a range from 1 to 10.

The average rating reported by people who had started with progressive MS was worse in each of the categories. Walking ability was reported as the most severe symptom in people with progressive MS, while the people who began with a relapsing form of MS rated fatigue as their worst symptom.

Of the 19 categories, 17 were reported to be significantly more severe in people with progressive MS compared to people with relapsing MS. No differences were seen in the experience of visual symptoms and cognitive symptoms of people with the different forms of MS.

The need for better and swifter research into progressive MS is one that founded the International Progressive MS Alliance. The Alliance, of which MS Research Australia is a managing member, is an unprecedented global collaboration of MS organisations, researchers, clinicians, pharmaceutical companies and people with progressive MS, to transform the landscape for people with this form of the disease. It aims to enable new treatment discoveries whilst reducing the time and cost of testing potential treatments, in the hope that treatments will be found for all people with progressive MS.

This new Australian research shows that the earlier treatments can be given for people with progressive-onset MS, the better.

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