How much time do I have left? Life expectancy with a diagnosis of multiple sclerosis.
The diagnosis of an incurable disease is stressful for those affected and their family members. Multiple sclerosis is one such disease, and it affects around 250,000 people in Germany alone. Despite intensive research worldwide, the causes of the disease have not been clarified, nor is there a cure in sight. One of the most pressing questions for those affected is therefore of course: How does the diagnosis of multiple sclerosis affect life expectancy? A positive message first: Studies show that the life expectancy of those affected is getting closer and closer to the average. We explain the most important factors and show what influence those affected can have.
Looking at the calendar and the anxious question: How many years do I have left?
Life Expectancy in MS – The Study Situation
First of all, doctors do not consider MS to be a fatal disease, even though several studies show that the average life expectancy of people with MS appears to be lower than that of the general population. There are also indications that it is increasingly approaching the general average. In order to make such a statement scientifically accurately, time is needed for studies lasting several years and a sufficiently large amount of data. There are two studies that have been able to use both to an appropriate extent in recent years. One of them evaluated the data of 5,797 people with MS and a comparison group of 28,807 people without MS over a period of 24 years - starting in 1980. All of the people came from the Canadian province of Manitoba. A Norwegian study that evaluated patient data from MS sufferers from 1953 onwards looked at an even longer period of time. In total, the data of 1,388 patients was processed over a period of 60 years. 87 percent of patients had a relapsing-remitting course of MS, while 13 percent suffered from the primary progressive form of the disease.
Life expectancy in studies on average seven years lower
Although studies were conducted in different regions, they came to similar results: At around 77 years, the average life expectancy of people with relapsing-remitting MS was around seven years below the population average. In contrast, life expectancy for the primary progressive form was on average 14 years below the average. In the Norwegian study, MS - or complications directly caused by the disease - was given as the cause of death in 56 percent of cases. In the Canadian study, this figure was slightly lower at 44 percent. There were hardly any deviations from the rest of the population for the other causes of death: the largest proportion was cardiovascular disease, followed by cancer.
In some studies, the life expectancy of MS patients is lower than average.
Is suicide also a reason for higher mortality?
The diagnosis of a chronic illness such as multiple sclerosis can trigger severe depression and even suicidal thoughts in some sufferers. We have already pointed out the connection between the diagnosis and mental illness in an article (see Thielscher, C. et al. 2016). Studies also show that the suicide rate among sufferers is actually higher than the average population. A major Swedish study published in 2016 found an almost 80 percent increase in the risk of completing suicide for MS sufferers (Brenner 2016). Compared to the comparison group, the risk of attempting suicide was more than twice as high for MS patients: extrapolated, this means that for every 100,000 MS sufferers, there are around 117 suicide attempts per year. In the comparison group, there were only around 51 suicide attempts per 100,000 per year. The risk of actually completing suicide - not just attempting it - was higher for people with MS: In the study, the figure was around 30 people per 100,000 people affected, compared to around 17 people in the comparison group. However, the study did not record numerous possible risk factors - for example, it did not take into account data on disability progression, medication used, frequency and severity of attacks, psychiatric diagnoses or concurrent physical illnesses. It is therefore unclear whether MS or concurrent factors trigger suicide; however, a correlation can be statistically proven.
Here you will find contact persons if required
Are you thinking about taking your own life? Talk to other people about it. Immediate help is available around the clock from the anonymous telephone counseling service on the nationwide free number 0800/111 0 111 or 0800/111 0 222 and on the Internet at www.telefonseelsorge.de .
Depression is not uncommon in people diagnosed with MS.
How meaningful are the studies?
Let us return to the question of how MS directly affects the life expectancy of those affected: despite the relative amount of data, the studies mentioned at the beginning are of course not suitable as a prognosis tool for individual cases. They merely represent an average and, to put it very bluntly, only for the Canadian province of Manitoba or the Norwegian province of Hordaland. It must also be remembered that these studies only go up to 2005 and 2012 respectively. Some drugs, such as beta interferons, have only been used since the early 1990s, and even more effective drugs are now being used. Their effect on the course of the disease cannot therefore be adequately captured in the data. In other words: the results only ever reflect a period of time, but life expectancy changes over time.
increase in life expectancy in recent years
One result from the Norwegian study can lead to cautious optimism in this context: the researchers also examined the development of excess mortality depending on the time of MS diagnosis. For excess mortality, a value greater than 1 means a higher mortality than expected, while less than 1 indicates a lower mortality. Patients whose MS was diagnosed between 1953 and 1974 had an excess mortality rate of 3.1. For those who began the disease between 1975 and 1996, the value was 2.6, and for those diagnosed between 1997 and 2012, the excess mortality even fell to 0.7. A value that is surprising, as it would even mean an under-mortality. However, this analysis simply lacks data on actual life expectancy, on the one hand because the study ended and on the other because many of those affected are probably still alive now. Nevertheless, the following conclusion can be drawn: the life expectancy of those affected is continuing to approach the average. However, the study does not clearly show whether this is due to improved treatment methods for MS or whether other factors play a role.
In the study described here, the excess mortality of MS patients has been decreasing continuously for years.
Course of MS as a factor
Let's take a look at the different forms of the disease: We differentiate between the relapsing and progressive, i.e. chronically progressive, form. Around 80 percent of the diseases begin as a relapsing variant. A relapse is the sudden appearance of a symptom of the disease for at least 24 hours. Relapses are also characterized by the fact that the symptoms partially or even completely disappear. In around half of the cases, relapsing MS turns into a chronically progressive form. This is then referred to as secondary progressive MS. Symptoms then no longer occur in relapsing forms, but continuously - and they also worsen. This is the case from the start in up to 20 percent of all MS cases. This is then referred to as primary progressive MS. The treatment of MS aims to use different medications to influence the frequency and severity of the relapses and to reduce the progression of the disease. As described above, life expectancy is on average lower, especially in progressive forms of the disease, although the speed and possible acceleration of progression can vary greatly among those affected.
The course of MS disease has an influence on life expectancy.
Focus on secondary diseases in therapy
In addition to the course of the MS disease, complications from secondary diseases, which are often triggered by MS, are the most important factor influencing life expectancy. These include respiratory diseases and urinary tract infections in particular. Infectious diseases often have a more serious impact on MS patients because the immune system is weakened by MS therapy. In some rare cases, these infections can be severe or even fatal, so they are also included in the statistics. And even if an infection itself can be treated well, subsequent damage can sometimes occur that can have an impact on life expectancy. Secondary diseases therefore account for a significant proportion of the excess mortality of MS patients, but can also be treated better and better with modern treatment methods.
Fatigue and an active lifestyle as an influencing factor
The effects of fatigue should not be underestimated, and you can find out more about them in this article . This is a state of intense exhaustion and lack of motivation, which is one of the most common symptoms of MS. Fatigue hinders the necessary urge to move; those affected often withdraw because they cannot take part in many activities due to their easy exhaustion. This is particularly fatal for people with MS: it turns out that they can particularly benefit from an active lifestyle and good general stamina. Since MS often impairs mobility, it is all the more important to counteract this with sufficient exercise and to strengthen the cardiovascular system - of course always within your own means and without exhausting yourself.
Fatigue can limit the activity that is so important for MS patients.
Healthy nutrition for a longer life?
A healthy and balanced diet not only promotes well-being: while animal fats should be avoided as they are suspected of having an inflammatory effect, other foods can even help maintain normal nerve function. We have put together an article for you detailing which foods are particularly suitable for MS. The importance of diet for the life expectancy of an individual cannot be determined with any certainty in people diagnosed with MS, just as it cannot be determined in people without the disease. However, it is undisputed that a balanced diet is beneficial for health.
What does this mean for my life expectancy?
Somehow frustrating, but perhaps that's a good thing: No reliable prognosis can be made about the life expectancy of individual people. Individual conditions and living circumstances are too different: psychological stress, relapses, disability progression, physical activity, diet, tobacco and alcohol consumption - some factors are within the sphere of influence of those affected, others can be influenced little or not at all. Even qualified experts cannot make a prediction about the course of multiple sclerosis and life expectancy of individual patients. But perhaps the most important message is: Statistically speaking, the life expectancy of those affected has become more and more similar to the average in recent decades. The reason: improved therapies mean that those concurrent diseases that are a main trigger for the shorter average life expectancy of those affected can be treated more and more specifically. A conscious lifestyle and a healthy diet as well as close medical monitoring, in which possible concurrent diseases are detected very early, can even make a positive contribution to life expectancy in individual cases. This means that with MS you may even live longer than if you had never received the obviously frightening diagnosis. Regardless of this, the same applies to people with MS as to all those without such a diagnosis: a conscious and active lifestyle and a positive attitude not only make life longer on average - they definitely make life more beautiful.
External sources
- Survival and causes of death in multiple sclerosis: a 60-year longitudinal population study (Lunde HMB, Assmus J, Myhr K, et al, 2017 – English source)
- Life expectancy with multiple sclerosis (Amsel.de, 2011)
- Effect of comorbidity on mortality in multiple sclerosis (Ruth Ann Marrie et al, 2015 – English source)
- The risk of developing depression when suffering from neurological diseases (Thielscher, C. et al, 2016 – English source)
- Multiple sclerosis and risk of attempted and completed suicide – a cohort study (Brenner et al, 2016 – English source)
