What is the life expectancy in multiple sclerosis?
The prognosis of people with multiple sclerosis has improved in recent decades: Life expectancy is often not significantly shortened by the disease. Many affected people live with the disease for decades. However, a malignant (malignant), i.e. particularly severe, course of multiple sclerosis sometimes ends fatally after only months. But this is rare.
More often, people with MS die from complications such as pneumonia or urosepsis (blood poisoning originating from the urinary tract). Suicides are also more common among them than in the normal population.
In principle, it should be remembered that there are many factors that have an influence on health and life expectancy – in people with multiple sclerosis as well as in healthy people. These include, for example, heavy tobacco and alcohol consumption, low educational level or social and psychological burdens and stress, for example due to unemployment or divorce.
The individual course and prognosis of the disease thus depend on many factors and therefore vary greatly from person to person. Even the best expert is therefore unable to make an exact prediction about the course of multiple sclerosis and life expectancy for individual sufferers.
What happens during an MS relapse?
- last at least 24 hours
- have an interval of more than 30 days from the onset of the last episode, and
- are not triggered by an elevated body temperature (Uhthoff phenomenon), an infection, or other physical or organic cause (otherwise they are referred to as a pseudo-relapse).
Single events lasting only a few seconds or minutes (for example, a sudden severe muscle spasm, trigeminal neuralgia) are not considered a relapse. However, if several such single events occur over the course of more than 24 hours, this can be considered a relapse.
Each MS relapse is triggered by one or more acute inflammatory foci in the central nervous system (CNS), i.e. in the brain and spinal cord. In the course of this inflammation, nerve sheaths (myelin sheaths) are destroyed, a process that physicians call demyelination.
The affected nerve fibers are no longer able to transmit nerve signals properly. Depending on where the inflammation occurs in the CNS, there are previously unknown symptoms and/or already known complaints.
The time intervals between two successive episodes, during which the condition of the affected person usually does not worsen, last for different lengths of time – but at least 30 days. Under certain circumstances, however, they may even extend over months or years.
What is the course of multiple sclerosis?
In multiple sclerosis (MS), inflammation-related damage (lesions) occurs at several sites in the central nervous system, causing a wide variety of neurological symptoms. Depending on the exact course, physicians distinguish between the following forms of MS:
- Relapsing-remitting multiple sclerosis (RRMS): MS symptoms occur episodically, i.e. in relapses. In between, the disease activity stands still to a certain extent. The first relapse is called clinical isolated syndrome (CIS).
- Primary progressive multiple sclerosis (PPMS): The disease progresses continuously from the beginning without relapses.
- Secondary progressive multiple sclerosis (SPMS): The disease starts with relapses and then changes to a progressive course.
Relapsing-remitting MS (RRMS)
RRMS: active, inactive or highly active
Physicians speak of active RRMS when there is disease activity. This means that the affected person is currently experiencing a relapse and/or the magnetic resonance imaging (MRI) shows new or enlarging lesions or contrast agent-absorbing lesions (= active inflammatory foci).
Otherwise, relapsing-remitting MS is just inactive, such as in the interval between two relapses.
In contrast, a highly active course is present when:
- a relapse has led to a severe deficit that interferes with daily life after exhaustion of relapse therapy and/or
- the patient recovers poorly from the first two relapses, and/or
- relapses occur very often (high relapse frequency) and/or
- the affected person develops a disability of at least 3.0 points on the Expanded Disability Status Scale (EDSS) in the first year and/or
- in the first year of disease, the so-called pyramidal tract is affected by disease activity (nerve fiber bundle that carries motor signals from the brain to the spinal cord).
The Expanded Disability Scale EDSS is a performance scale that can be used to indicate the degree of disability of an individual with multiple sclerosis.
Clinically Isolated Syndrome (CIS)
However, the diagnosis of “relapsing-remitting multiple sclerosis” is not yet confirmed in the case of such a first-ever disease flare-up, because not all diagnostic criteria are fulfilled. Specifically, the so-called temporal dissemination, i.e. the occurrence of inflammatory foci in the CNS at different times, is missing in a clinically isolated syndrome. This criterion is only fulfilled if:
- there is a second disease episode or
- a follow-up magnetic resonance imaging (MRI) scan reveals new foci of inflammation in the CNS or simultaneously detects lesions that absorb contrast medium (active foci of inflammation) and those that do not (older foci), or
- certain protein patterns – so-called oligoclonal bands – can be detected in a nerve fluid sample (CSF sample).
Only if at least one of these three points is fulfilled can a person with a previous clinically isolated syndrome actually be diagnosed with multiple sclerosis – more precisely: relapsing-remitting MS.
However, there are also people with HIS in whom this is never the case – that is, in whom the single episode of neurological symptoms remains and does not develop into multiple sclerosis.
Secondary progressive MS (SPMS)
However, even in this secondary progressive MS (or secondary chronic progressive MS), there are often phases in which the progression of the disease temporarily stops. Furthermore, additional relapses sometimes occur during the progressive course of the disease.
Accordingly, the terms “active” and “progressive” can be used to characterize the type of progression of SPMS more precisely. By “activity”, physicians mean the occurrence of relapses and/or MRI activity (as in relapsing-remitting MS above). Progression” means a relapse-independent and objectively measurable increase in disability over a defined period of time.
Thus, there are the following progression types of secondary progressive MS:
- Active and progressive: with relapses and/or MRI activity as well as relapse-independent increase of disability
- Active and non-progressive: with relapses and/or MRI activity, but without relapse-independent increase in disability.
- Non-active and progressive: without relapses and/or MRI activity, but with relapse-independent increase in disability
- Non-active and non-progressive: without relapses and/or MRI activity, and without relapse-independent increase in disability
Primary progressive MS (PPMS)
Thus, physicians also distinguish the course types active and progressive / active and non-progressive / non-active and progressive / non-active and non-progressive in this multiple sclerosis course – i.e. the same course types as in secondary progressive MS (see above).
Benign and malignant MS
In connection with the multiple sclerosis course sometimes the talk is about “benign MS”, i.e. “benign” MS. This term is used inconsistently among experts. According to one definition, benign MS is present when all neurological systems are still fully functional in an affected person 15 years after the onset of the disease. Long-term studies have shown, however, that in most cases there is still a considerable progression of the disease with permanent disabilities.
The counterpart to benign MS is malignant MS – multiple sclerosis that progresses very rapidly (fulminantly) and leads to severe disability or even death within a short time. This is the case, for example, with acute malignant MS (Marburg type). This rare form of multiple sclerosis is also called “Marburg variant of MS” or “Marburg disease”.
