Multiple Sclerosis
Progression
MS progresses from the start. But so has our understanding.
MS progression is a topic you may often hear about in the MS community. But what does it really mean, and what are the underlying processes that cause it? MS progression is often described as the gradual worsening of symptoms or disability experienced by people living with MS. But the latest research shows us that there is much more happening in the body and brain that’s not always visible. The underlying disease process occurs at the start of MS and can continue even if you don’t experience symptoms. And it may not be related to relapses.
The more you understand about how MS progresses, the better equipped you will be to talk to your healthcare team. Here, we provide you with the information you need to help you take an active role in managing your MS, and to make sure you’re an equal partner in decision-making at your next clinic visit.
I received a diagnosis of MS at 27, but looking back, I would say I probably had MS since I was about 23 years old. The damage caused by MS was continuing for all that time, and now I have difficulties running. My advice would be to try to take MS seriously early on and don’t hide away from it. You can help to reduce the progression and damage from MS if you take action early.
How does MS progress?
3. At first, your body is able to work around the damaged nerves, so you might not notice symptoms.
4. As nerve damage continues to build up, symptoms become more noticeable or more common and disability may start to worsen, as the brain runs out of alternative pathways to send messages.
These stages are what we call MS disease progression.
The central nervous system, or CNS, is a network that sends information between nerve cells.
This takes the form of electrical signals travelling along nerve fibres.
[A diagram of a brain with electrical signals moving through a network of nerve fibres is shown]
Imagine it like a rail network, but with billions of trains travelling up to hundred metres per second to reach their destinations.
[The network of nerve fibres transforms into a diagram of a rail network]
On a rail network, when the tracks are damaged, they can be repaired, but only so many times. Eventually, damage can no longer be repaired, and trains are unable to travel on those tracks.
This could negatively affect the network, but when a track is closed, the signaller can reroute the trains, and services may be able to carry on as normal.
[A signaller reroutes a train from his control room. A moving train is shown changing to a different track, and then continuing on its journey]
Similarly, in MS, the immune system attacks the CNS, leading to inflammation. The damage can sometimes be repaired by the body, but when it can't, nerve cells and fibres are lost.
This permanent loss of nerve cells and fibres is known as disease progression.
[The rail network diagram is shown, with some rail lines down and routes out of action]
Disease progression starts at the very beginning of MS, often before diagnosis, and it happens in all forms of MS, despite what form a person has or is diagnosed with.
Like the trains that can be rerouted onto other tracks, those living with MS may not have disability that is visible to others.
This may be because MS affects functions that others cannot see or their CNS has ways to hide it.
At the start of MS, disease progression can be difficult to detect because a CNS can initially compensate for a loss of nerve cells and fibres with what's called neurological reserve.
[The signaller is rerouting trains from his control room and looking relaxed as services continue to run, even though parts of the track are closed]
The CNS does this by sending signals through undamaged areas or adapting undamaged areas to take on new functions in addition to repairing damaged areas.
[The signaller opens one of the closed rail tracks that has now been repaired]
On the rail network, it's only when all remaining tracks are at full capacity, and signallers run out of options, that the network starts to experience problems and passengers notice.
[The signaller looks anxious and a departure board shows many trains being cancelled. Many passengers are shown standing on a platform in the rain, looking angry]
In the case of MS, when the CNS can no longer compensate for damage, this is a point where symptoms become more noticeable or disability worsens.
Because progression happens in all types of MS, from the start, but permanent process that can go unnoticed for many years,
[The rail network diagram is shown with many routes closed]
…it is important that those living with MS speak with a healthcare provider about disease progression and how to identify it.
Treatment as early as possible is important to slow the progression of physical disability and helping reduce the impact that this disease can have on daily life.
[A passenger disembarks a train and looks happy as she goes about her life.]
Understanding MS progression
This short video provides an animated summary of how and why MS progresses and how it can affect your body. It compares the nerve signalling pathways in your brain to a rail network and shows how MS forces the rail network to use alternative routes to work around the train track damage and increasing number of signal failures, until the alternative routes are also no longer available.
It’s difficult to predict what kind of symptoms you will experience, when they will happen, or how long they will last. Scientists are constantly researching new methods to help detect and predict disease progression, such as molecular biomarkers. Although these are still in the early stages of development, they will hopefully be available in the near future and may help your healthcare team better understand the progression of your MS and how it’s responding to therapies.
The type of symptoms you experience will depend on when, where, and how severe the nerve damage is in the brain. For example, if a nerve in your eye becomes inflamed, it can temporarily lead to impaired vision – this is often one of the first symptoms that people with MS notice.
Head to our symptoms page to find out more about the type of symptoms you may experience and how to manage them. Make sure you let your healthcare team know if you have experienced any new symptoms that may be linked to your MS.
All MS progresses from the start – whether you have symptoms or not. The graph below shows one example of how MS symptoms may appear over time (green line) and what may be happening that you can’t see. On the surface, you may experience periods of symptom worsening (relapses) and symptom recovery (remission).*
Although all types of MS progress right from the start and share a similar underlying disease process, how quickly your MS develops is unpredictable and will be unique to you.
Most people with MS experience relapses of symptoms followed by periods of remission of their symptoms with a partial or complete recovery such as in the relapsing-remitting form of MS (RRMS).
Even if you have relapsing forms of MS and have no noticeable symptoms, MS can still progress. To detect this early on, it’s important to speak to your neurologist about the smallest changes you notice in your body, even if you think it’s not related to your MS. Your doctor can also perform magnetic resonance imaging (MRI) scans and additional tests to check for signs of new or changing inflammation in your brain.
Talk to your neurologist about treatments that are available to help with your MS. Starting treatment earlier can slow the progression of physical disability to help you live the life you want.
Take a look at our types of MS page to find out more about how the different types of MS are not actually all that different.
There are a whole range of examinations, tests, and questionnaires to check how your MS is progressing:
- Overall disability: The Expanded Disability Status Scale (EDSS) assesses overall disability, with a focus on your ability to walk unaided, on a 0–10-point scale as scored by a neurologist. A score of 1.0 to 4.5 indicates ability to walk without assistance, whereas a score of 5.0 to 9.5 indicates walking impairments. For example, a score of 6.0 indicates you need an aid to help you walk.
- MRI scan: Your neurologist may also suggest an MRI scan to check for damage to your central nervous system and any signs of new or evolving MS activity. Regular MRI scans can help identify silent MS progression, which continues to occur, even in the absence of noticeable symptoms.
- Assessment of visible MS symptoms: Symptoms such as problems with mobility and coordination are measured by your ability to walk a certain distance or complete a hand-eye-coordination activity within a certain period of time.
- Assessment of invisible MS symptoms: Symptoms such as mood, fatigue, and problems thinking are usually assessed by questionnaires and cognitive assessments.
Take control of your MS – monitor symptoms in between clinic visits.
By monitoring your symptoms in the clinic and at home, you can identify the early warning signs and help your neurologist develop a treatment plan to help with your MS.
Take note of your symptoms between clinic visits so you do not forget to share these with your neurologist.
I track my symptoms by telling my mom about them, writing them on a calendar and in my journal. I track when I notice a change in my symptoms, and I keep note of how long this change lasts.
- Stay vigilant even if you don’t have symptoms. MS progression starts at the very beginning of MS, regardless of your type of MS today.
- Track your symptoms. The more you are aware of your condition and how it develops, the better able you will be to help your healthcare team help you.
- Tell your doctor as much as you can. The more they know about how your MS is impacting you, the better they can create a treatment plan to suit you.
- Think ahead and set goals and expectations. Think about what successfully living with MS looks like to you – now and in the future. Starting treatment early can slow the progression of physical disability to help achieve these goals and expectations.
When do you think is the best time to start managing your MS?
More articles on ways to manage your MS that you may find interesting.
Find information to help you make more informed decisions about your disease management.
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