Multiple sclerosis (MS) is a progressive disease. While MS can present itself differently for each person, its underlying biology is similar for everyone. No matter what form of MS a person is diagnosed with, disease progression is present from the start. Here, we address frequently discussed myths and misconceptions about MS, shedding light on what disease progression really means, how it affects people with MS and how to best manage it.
Disease progression is not an issue in relapsing-remitting MS (RRMS) - it only happens in progressive forms of MS
In MS, the immune system attacks and damages tissue in the brain, spinal cord, and optic nerve, which comprise the central nervous system (CNS). These inflammatory processes are present in all forms of MS.1
Inflammation in the CNS can lead to permanent damage to nerve cells and fibres, leading to disease progression.1
Recent research suggests disease progression starts at the beginning of the disease, regardless of which form of MS a person is diagnosed with.2,3,4,5 Although it may initially occur without any noticeable symptoms or disability worsening (permanent or steady disability worsening is also known as disability progression), if left untreated, disease progression ultimately results in the accumulation of noticeable disability.2,3,4,5,6
Progressive MS is advanced MS
In all forms of MS, permanent damage to the CNS occurs from the start of the disease.2,3,4,5
It is true that, if left untreated, most people with RRMS eventually transition to secondary progressive MS (SPMS), sometimes after years of relapses and remission.7
However, noticeable disability progression is recognised at diagnosis in PPMS. And research shows that PPMS and SPMS share similar features, such as age of onset, how fast disability worsens over time, and damage to the CNS that can be seen on MRI images.1,8,9,10
Disease progression and disability progression are the same thing
Disease progression and disability progression are inextricably linked, but they aren’t the same thing.
Disease progression is the permanent damage to a person’s central nervous system (CNS), which occurs in every form of MS. It may not immediately result in noticeable symptoms.2,3,4,5 If left untreated it will eventually lead to disability progression.
Disability progression is the steady worsening of symptoms and permanent accumulation of disability, which people with MS may notice as symptoms such as reduced mobility of their arms or legs, problems thinking or with their memory, or inability to control their bladder.2,3,4,5
People can have MS, but not have disease progression yet – it doesn’t start until they’re much older
Disease progression – permanent damage to a person’s central nervous system (CNS) – occurs from the start, regardless of which form of MS a person is diagnosed with.2,3,4,5
However, the CNS has a limited ability to remodel itself to compensate for loss of nerve cells and fibres – known as its neurological reserve.11 As long as the neurological reserve is able to compensate for disease progression, a person with MS may experience no, or only mild symptoms. It’s only after the neurological reserve has run out, and the brain is no longer able to compensate for the damage, that people with MS experience increasingly apparent symptoms and disability worsening.6,12,13
This is why it is critical that people with MS are treated as early as possible with a therapy that impacts disease progression, not just relapses.11
There’s no way to slow MS from progressing
An important goal of treating MS is to reduce disease progression as soon as possible to slow how quickly a person’s disability accumulates and progression’s long-term consequences.11
In a real-world study of people with MS, the risk of progressing to significant disability while still having the ability to walk 500 metres without aid (an Expanded Disability Status Scale [EDSS of 4] increased by 7% for every year without treatment.14 This means that if a person delays treatment for five years after diagnosis, they will have a 35% increased risk of developing significant disability (but still be able to walk 500 metres without aid).
Therefore, it is important that all people with MS, regardless of which form of MS they are diagnosed with, speak with their healthcare professional about treatment options as early as possible.
If people don’t notice their MS getting worse, it’s not progressing
Disease progression can occur without noticeable symptoms or disability worsening (permanent or steady disability worsening is also known as disability progression).2,3,4,5
As the majority of people with MS are not diagnosed until they experience noticeable symptoms, disease progression can go unnoticed for a long time.3
Identifying disease progression early in MS is important to manage and hopefully slow permanent loss of nerve cells and fibres, worsening of disability, and decline in day-to-day quality of life.11 Therefore, it is important that all people with MS, regardless of which form of MS they are diagnosed with, speak with their healthcare professional about disease progression.
There is no way to measure disease progression
There is no standardised approach to monitor MS disease progression. However, it can be measured with MRI.
Disease progression can also be monitored with signs and symptoms such as disability worsening, cognitive impairment, and the impact of MS on a person’s daily life.
Roche is at the forefront of understanding how underlying progression can be detected, as early as possible, by developing new measurement approaches and unique digital tools that people with MS can use themselves. We hope these will help improve disease management and the lives of people living with MS.
Understanding what disease progression in MS means for you and your health is an important step in taking an active role in managing your disease. Explore our hub to learn more about disease progression and read stories from the MS community on the importance of managing your MS early and live life to the fullest.
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2. Brownlee WJ, Altmann DR, Alves Da Mota P, et al. Association of asymptomatic spinal cord lesions and atrophy with disability 5 years after a clinically isolated syndrome. Mult Scler. 2017;23(5):665-674.
3. Cree BAC, Hollenbach JA, Bove R, et al. Silent progression in disease activity-free relapsing multiple sclerosis. Ann Neurol. 2019;85(5):653-666.
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