Understanding multiple sclerosis as a progressive disease from the start
Expert neurologists share their views on understanding the progressive nature of multiple sclerosis
Multiple sclerosis (MS) is a progressive disease from the start, and this progression can manifest itself in many different ways. When discussing this with people living with the disease, it’s important to take an active role in helping them better understand what disease progression means when it comes to their health.
We heard from world-leading neurologists who break down the science behind disease progression in MS, discuss the importance of early management of progression and their views on why it’s important for patients to understand and recognize this progression in order to feel empowered to take control of managing their disease.
So I think it's important for patients to recognize that progression can occur in all disease stages of MS...
[00:00]
I think it’s important for patients to recognize that progression can occur in all stages of MS.
We’ve traditionally thought that you first have a relapsing-remitting disease course, and then it can transform into a secondary progressive course — or that you can start with a primary progressive disease course.
But we now know that many relapses can lead to permanent disability. So progression can occur from the very start of the disease — and probably does.
[00:32]
We also believe that the secondary progressive phase results from damage occurring early on in the disease.
So, if we’re able to prevent relapses and prevent disability progression at the beginning of the disease, then we believe we may be able to eradicate secondary progressive MS altogether.
The early management of progression is important for two big reasons…
[00:00]
The early management of progression is important for two big reasons.
Firstly, progression affects people’s lives even in the early stages of relapsing-remitting MS — and it does so in more subtle, difficult-to-grasp ways: affecting cognitive function, causing fatigue, leading to minor impairments in balance that gradually result in people giving up sports or changing their employment.
So that’s why it’s important — on the one hand.
The second point is that progression, if it continues year on year on year — well, if you start at the age of 20 with something that’s changing very slowly, it might be difficult to identify after a year or two.
[00:43]
But not after 20 years. Not after 30.
These people reach the age of 40 or 50 — when they should be looking after their family, earning a living, enjoying their children — and yet the accumulation of damage over many years leads to real problems that might not have been obvious after one or two years.
And I think that’s really what’s at the root of it.
[01:22]
When you see enough people with MS, and you follow them for long enough — and it’s really that length of time — then you start to truly see how this builds.
And that’s why it’s so important to identify progression early — and stop it, stop it dead — so that people can have as full a life as possible.
Telling patients that MS is a disease that comes with progression and destruction of tissue from the very first day is the first and most important thing...
[00:00]
Telling patients that MS is a disease that comes with progression and tissue destruction from the very first day is the first and most important thing, I believe. This helps people understand why we, as neurologists, recommend treatment at a stage where they may or may not yet have difficulties in daily life — when they feel completely fine, with no signs or symptoms. They often ask us, “Doctor, why should I be treated? I’m feeling fine.” And you need to help them understand — and clearly communicate — that they are treating themselves now to prevent increasing and sustained dysfunction, as well as structural damage.
[00:28]
And this damage can be avoided with the therapies that have become available for multiple sclerosis in recent years
So one of the main questions is how we can empower patients so they know about the risk of progression in disease and how to prevent that, so I think we can do that with education about the disease, we try to do that with all our patients…
[00:00]
So one of the main questions is how we can empower patients — so they know about the risk of progression in disease and how to prevent that. I think we can do that through education about the disease.
We try to do that with all our patients — we educate them about what MS is, not just about the goal of therapy or the treatment options we have today.
I think when we empower patients, they’re able to make better decisions. And we try to do this together with the patient — to
[00:36]
choose the most appropriate therapy for each individual.
This idea that you suddenly become progressive is completely wrong. It starts from the very beginning...
[00:00]
So this idea that you suddenly become progressive is completely wrong. It starts from the very beginning. All those processes — I like to describe it as “shredding the brain slowly.”
What happens is: you lose reserve. People compensate for the damage, and then, when the compensatory mechanisms fail, that’s when we see the clinical manifestations. But that whole process has been occurring much earlier.
And we’re now beginning to identify, using modern technology, various processes that underlie that — which are possibly linked
[00:34]
to the focal inflammatory lesions. Not everything causes relapses. There may be processes like slowly expanding lesions, subcortical lesions, gray matter atrophy, microglial or glial cell responses.
All these things have emerged — and they are present from the very beginning.
Disease progression can be a complicated topic to understand. The more we’re able to take an active role in truly understanding not only what disease progression means when it comes to MS, but also understanding that while it may not present itself in the same way in each person – it’s something that can be managed and treated as early as possible.