In multiple sclerosis (MS), the immune system attacks and destroys the fatty myelin coating that surrounds and insulates nerve cells in a process known as demyelination. MS is a lifelong condition, and common symptoms include fatigue, muscle spasms, walking difficulties, or numbness and tingling of the face, body, arms and legs. These symptoms can worsen with time, affecting daily activities and reducing a person’s quality of life.
The disease is highly variable, and some people are affected more than others upon and after diagnosis. Treatments are available to help manage a number of symptoms.
Life expectancy for people with MS has increased considerably in the last 20 to 25 years. On average, however, a person with MS can expect to live seven fewer years than someone without this disease.
According to the National MS Society, on average, an MS patient lives about seven fewer years than someone in the general public, largely because of disease complications or other medical conditions, like cardiovascular disease. Only rarely does the disease progress so quickly that it is deadly.
Due to advances in treatments, care, and lifestyle adjustments, MS often progresses slowly. Many studies show that, nowadays, about two-thirds of all patients retain a fair degree of mobility — the ability to walk, although likely with an assisted device — some 20 years after being diagnosed. Assisted devices can range from supports to aid in walking, to scooters used on occasion to save energy and avoid fatigue.
The course of the disease depends on each patient’s risk factors, like having a family member with MS, cigarette smoking, and vitamin D sunlight exposure. And, among African-Americans, the disease tends to be a more progressive form and progression can be quicker.
MS prognosis is thought to be better for people with relapsing-remitting MS than for those with progressive forms of MS, likely because of a better response to disease-modifying therapies.
- Studies on life expectancy in MS
- Factors that affect life expectancy
- Multiple Sclerosis Prognosis Snapshot
- Types of MS
- Table 3
- Our first question comes via email, from Isabel in Portugal: What is MRI?
- Mehnaz asks on Facebook: How is an MRI scan interpreted? Do new relapses appear on the scan?
- Tony, from the US asked: How long do you think it will be before the first really useful results of your research are known, and how accurately do you think you will be able to predict disease progression?
- Lisa asks: How will the general public be able to access your research results?
- One question that came up a lot over email was people telling us that even when the MRI shows no new lesions their symptoms are clearly getting worse. They would like to know why this happens.
- Reginald says: Since starting on medication the relapse rate has pretty much come to a stop (says the MRI scan) but I feel like the disease is still progressing. Why is this?
- Cathy, via Facebook: how trustworthy are MRIs on prediction of progression?
- Kris from Australia would like to know: Is MRI really effective in diagnosing MS?
- Bergþóra asks: Is MRI suitable enough to determine whether a patient has relapsing-remitting MS or secondary progressive MS and therefore should receive a disease-modifying drug treatment or not?
- Florence, from Canada is asking: How close are you in determining which individuals with MS are at a higher risk of developing early disability? How accurate do you expect these predictions to be?
- Linda in the US asks: Can you please explain about disease progression regarding MRIs of brain lesions versus spinal cord lesions in determining progression?
- Karen, from Canada says: I would like to hear about how you can predict cognitive decline with MRI scans.
- Alison is asking: You say that the MRI provides an objective assessment of the brain, but I am interested to know your thoughts on hidden inflammation, and recent research on this, which is not picked up by an MRI?
- Nigel asks via email: What is the value of me knowing my likely rate of progression?
- Peter, in the UK: Are you going to be collecting data from people with primary progressive MS?
- Joanna asks via Facebook: I have secondary progressive MS, is there any research going on?
- Massimo asks from Belgium: I have relapsing-remitting MS and have had no relapse in five years, without treatment – does your study includes cases like mine?
- Elizabeth, from the US asks: Does MS progress faster for African-Americans? Will this research target people of colour and give physicians the knowledge to slow the progression of the disease?
- Rosario, from Argentina: Do you use a specific type of MRI scanner for your research? How could your research be compared to MRI scanners in other countries, taking into account different technologies?
- Marianthy asks: Do you believe that the more Teslas an MRI scanner has, the more accurate the results will be?
- Eric says: I have read that there is a new MRI machine with a stronger magnet that can see grey matter as well as white matter in the brain. How soon before this grey matter imaging is widely available ?
- Related posts:
Studies on life expectancy in MS
A 2013 review study published in the Neurology journal, citing data “from numerous large cohort registries”— “Mortality in patients with multiple sclerosis” — estimated that people with MS live on average 7–14 fewer years others. It, however, also considers MS and survival a “poorly described aspect of the disease.” The study found many factors that affect life expectancy in these patients, including the age at MS onset, the level of severity, the rate of disease progression, and types of treatment available. Long-term disability is not necessarily a cause of death for MS patients.
Another study, from 2014, compared the lifespan of more than 30,400 people with MS to 89,800 people without MS using a U.S. commercial health insurance database. Although with some limitations (the study did not considered type or severity of MS, or information on other medical conditions), the study found that the average life expectancy of MS patients in the U.S. is shortened by six years compared to those without MS.
Another study, co-funded by the MS Society of Canada, and titled “Effect of comorbidity on mortality in multiple sclerosis,” also looked at this issue in 2015, comparing an MS population (almost 6,000 people) with a non-MS group matched by age and gender (almost 89,000). Researchers here evaluated the impact of other medical conditions (comorbidities) like diabetes, heart or lung diseases, or depression on life expectancy in both groups. They also concluded that life expectancy with MS is reduced by seven years, although has increased over the past 25 years. Study results, importantly, highlight the importance of treating comorbidities in MS patients, and of adopting a healthier lifestyle as ways of improving life expectancy.
Factors that affect life expectancy
As mentioned, life expectancy in MS is getting better, for reasons that range better treatments, to improved healthcare and lifestyle adaptations.
- Better treatments. Because of “disease-modifying” therapies, people with relapsing forms of MS are living longer than those not on these treatments, provided they stay on a therapy. The National MS Society refers to these therapies as the “best strategy currently available” to slow the disease’s natural progression.
- Improved healthcare and lifestyle changes. Paying attention to factors that affect quality of life and adopting a healthier lifestyle can help to reduce the risk of other conditions, such as cardiovascular diseases. Recommended lifestyle changes include quitting smoking, getting regular physical exercise and drinking less alcohol. A healthy diet can help to better manage some symptoms, such as fatigue, and bladder and bowel problems.
Beginning treatment as early as possible in MS is highly recommended for patients, as it might slow the disease’s advance.
Here are some factors that imply a faster MS progression, and disability accumulation, in a person. But it is a prognosis snapshot for today, based on clinical signs and tests results that might aid a longer term estimate of progression. As new therapies are introduced and new insights into MS arise, their relevance can change:
Multiple Sclerosis Prognosis Snapshot
- Being older than age 40 at the onset of symptoms;
- Having more than two attacks in the first two years after onset;
- Having symptoms that affect urinary control, mobility, or mental functioning at disease onset, or having initial symptoms in many different areas of the body;
- Showing a high frequency of relapses, since repeat early relapses can cause the disease to progress quickly;
- Showing a high number of brain or brainstem lesions in an MRI scan at the time of diagnosis, or showing new or gadolinium-enhancing lesions in an MRI, implying active inflammation;
- Scoring more than 1.5 on the Expanded Disability Status Scale (EDSS, a scale that quantifies disability) after a second attack.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
If all signs point to the disease progressing, the conversation between patients and their doctors often shifts to the question of whether they should alter their treatment plan. Dr. Hughes believes choosing the right disease-modifying therapy for each patient based on their condition, symptoms and goals, is important for slowing MS progression.
As part of the process of assessing whether a patient should change therapies, Dr. Hughes and his patients weigh a multitude of factors. He will share efficacy, safety and tolerability data for the medicines they are considering, as well as discuss different types of administration that are available – whether that be weekly injections, daily oral pills or monthly or bi-annual infusions. Insurance coverage is another important discussion to have between patients and their neurologist or MS care teams, especially for newer medicines, to help understand the different support and services available to make sure they can gain access to the medicine they choose. Though there are many considerations, ultimately, Dr. Hughes says the decision to start taking a medicine or change medicines is up to the patient and their family.
Karrie agrees that patients need to have an open dialogue with their doctor to best manage disease progression. As her own disease has progressed, Karrie tries to stay optimistic, but she admits she wishes she could one day return to work or go back to being the athletic person she once was before she was diagnosed. Karrie knows that this is likely not a realistic aspiration, but she says that her conversations with Dr. Hughes have given her the right mix of realism and hope.
“The unknown is scary, I find it’s helpful to have a dialogue with your doctor about what’s coming versus what’s happening,” Karrie said. “I know that when I focused time with my doctor around planning for the future, as opposed to what hurts today, it was more productive – and it keeps me positive.”
Karrie sits on the board of the National MS Society, and in 2015, she founded MS Moments, a 501 (c)(3) nonprofit that provides financial assistance to individuals with MS in Central Iowa that helps them get health club memberships, medical massages, acupuncture, chiropractic care and much more.
Types of MS
It is generally very difficult to predict the course of MS. The condition varies greatly in each individual but most people with MS can expect 95% of the normal life expectancy.
Some studies have shown that people who have few attacks in the first several years after diagnosis; long intervals between attacks; complete recovery from attacks and attacks that are sensory in nature (i.e. numbness or tingling) tend to have better outcomes in the long run.
People who have early symptoms of tremor, difficulty in walking, or who have frequent attacks with incomplete recoveries tend to have a more progressive disease course.
MS tends to take one of three clinical courses each of which might be mild, moderate or severe:
1. Relapsing-remitting (RRMS)
Relapsing-remitting (RRMS) – characterised by partial or total recovery after attacks (also called exacerbations, relapses, or flares). The most common form of MS. 70 to 75% of people with MS initially begin with a relapsing-remitting course.
2. Secondary progressive (SPMS)
Secondary progressive (SPMS) – a relapsing-remitting course which later becomes steadily progressive. Attacks and partial recoveries may continue to occur. Of the 70-75% who start with relapsing-remitting disease, more than 50% will develop SPMS within 10 years; 90% within 25 years.
3. Primary progressive (PPMS)
Primary progressive (PPMS) – a progressive course from onset. Symptoms generally do not remit. 15% of people with MS are diagnosed with PPMS, although the diagnosis usually needs to be made after the fact, when the person has been living for a period of time with progressive disability but not acute attacks.
Clinically Isolated Syndrome (CIS) refers to a first episode of inflammatory demyelination in the central nervous system that could become MS if additional activity occurs.
The National MS Society in the USA have provided a table which outlines the three courses of MS along with charts that show what happens in MS over time:
MS can be among the most difficult of all diseases to diagnose because of the bewildering number of symptoms it causes and the multiple ways in which they can present. The “typical” MS patient is a young woman with abrupt, focal neurologic symptoms occurring discretely or in combinations, lasting weeks to months and then resolving, with new or recur-rent symptoms developing months to years later. The diagnosis may be especially difficult, or indeed impossible, when the patient is older, when symptoms are strictly progressive, or when there has been only one episode of neurologic dysfunction. Tests can buttress the clinical diagnosis of MS, but no laboratory findings are pathognomonic and all tests have pitfalls that limit their usefulness.
Magnetic resonance imaging (MRI) is a very sensitive but disappointingly non-specific technique for visualizing the inflammatory lesions of MS, which appear as multiple, irregular, confluent areas of increased signal intensity within the white matter of the brain, particularly around the ventricles. Nearly 90% of patients with MS have abnormal MRI scans. Various analyses and algorithms have shown that an MRI of the head should be the first test ordered to evaluate suspected MS patients. The major disadvantage of MRI remains its lack of specificity, since many conditions mimic MS on MRI. Too frequently, these “false positives” often inappropriately label patients with the diagnosis of MS and over-diagnosis of MS based on MRI changes (figure 1).
Axial T2-weighted MRI scan of the brain showing characteristic lesions of MS. These are irregular, primarily periventricular signal changes. The sagittal FLAIR scan shows the typical anatomy of the MS plaques radiating vertically away from the ventricles.
Abnormalities in the cerebrospinal fluid (CSF) are sufficiently common and characteristic to make CSF analysis fairly accurate for the diagnosis of MS. Spinal fluid protein and white blood cell counts are occasionally mildly elevated, but the most useful findings are the increases in the immunoglobulin G (IgG) level and synthesis rate. Immunoglobulins in the spinal fluid, presumably reflecting the underlying autoimmune activation, appear as distinct oligoclonal bands on CSF electrophoresis. The pattern formed by these bands varies from patient to patient, but they are present in some form in approximately 90% of all MS patients, while the few other diseases that produce similar banding are seldom mistaken for MS. The major obstacle to the use of CSF for the diagnosis of MS is the reluctance of patients to undergo lumbar puncture.
Evoked potentials play a more limited role in diagnosing MS. Evoked potentials measure conduction along specific central nervous system pathways by recording the electroencephalographic response to visual, auditory, or sensory stimulation.
A slowing in conduction is presumed to reflect inflammation and demyelination in that pathway, thus detecting an asymptomatic MS lesion. The sensitivity and specificity of evoked potentials do not approach those of the MRI or CSF but they sometimes uncover unsuspected lesions and thereby heighten the probability of MS.
The list of medical conditions that can cause multi-focal neurologic problems in young people is quite extensive and so the differential diagnosis of MS is far ranging. Table 3 is a non-exhaustive list of some of the more common conditions that mimic MS.
Partial differential diagnosis of MS.
1. Hysteria and somatization disorders.
2. Postviral demyelination (acute disseminated encephalomyelitis).
3. Vasculitis affecting the CNS.
4. Spino-cerebellar degenerations.
5. Lyme disease.
7. Stroke in the young.
8. Inherited white matter diseases (leukodystrophies).
9. Non-specific MRI abnormalities.
Traditionally, the diagnosis of MS depends upon showing that there is sclerosis (scarring or inflammation) that is multiple–patients must have two separate CNS lesions that have occurred in two or more separate episodes, which is to say they must have lesions disseminated in space and in time. These must cause white matter symptoms not gray matter symptoms. The neurological examination should show these objective abnormalities (preferably in a young patient between the ages of 20 and 40). Importantly, there should be no other disease accounting for the symptoms. In addition to these clinical criteria, the diagnosis can be supported using laboratory testing such as MRI scans, CSF analysis and evoked potentials. There nevertheless remain many pitfalls and nuances in the diagnosis of MS, and ultimately physicians often rely on their own judgment to diagnose MS rather than relying on predetermined or “official” criteria.4
Many patients who suffer an isolated monosymptomatic episode of demyelination, such as optic neuritis or transverse myelitis, will ultimately develop a second inflammatory event and so will be diagnosed as having MS. This is particularly true if MRI scanning of the brain at the time of their initial demyelinating event reveals white matter changes characteristic of MS. Therefore, patients with a single episode of demyelination and abnormal MRI scan of the brain are often presumed to be suffering from MS already. (This is true even though most “official” diagnostic criteria would not classify these patients as definite MS.) There remain some cases of clinically isolated syndromes with normal head MRI’s who apparently never develop clinically definite MS.
Arman (centre) answering questions with support from Sophie and Luke at MSIF
Arman Eshaghi, a researcher from Iran, was awarded one of MSIF’s McDonald Fellowships in 2014. This award enables talented young MS researchers from emerging countries to work with leading researchers in MS.
Arman is currently based in UCL Institute of Neurology in London, working with Prof Olga Ciccarelli, Prof Alan Thompson, and Prof Daniel Alexander. He has answered questions on his area of expertise (Predicting disease progression using MRI and computer models) on MSIF’s Facebook account on Wednesday 16 December 2015.
We would like to say a huge thank you to Arman for his time and to everyone who sent us questions. We had more questions than it was possible to answer in one hour (we even overran by nearly 30 minutes!) so Arman has answered as many as he could.
Here is a write-up of the questions and answers, which we hope you will find useful. Please do consider making a donation using the link at the bottom of the page to support researchers like Arman.
Our first question comes via email, from Isabel in Portugal: What is MRI?
Magnetic Resonance Imaging or MRI is a non-invasive approach to acquire images from tissues inside the body. MRI is based on molecular properties of different tissues, and could show early changes in tissues that may not be evident by other medical imaging techniques (such as CT scan or X-rays).
Mehnaz asks on Facebook: How is an MRI scan interpreted? Do new relapses appear on the scan?
MRI scans are usually interpreted by a neuroradiologist who looks at the appearance of lesions in specific areas of the brain. Since MS lesions appear to have a specific distribution in different brain regions, and develop over time, MRI scans provide an important tool to monitor and play an important role in the diagnosis. New relapses may or may not appear on MRI, this is because MRIs can only pick up some changes happening in brain. With the development of more advanced technologies in MRI and perhaps other markers, this could change. Currently a relapse is defined by clinical changes, alone.
Tony, from the US asked: How long do you think it will be before the first really useful results of your research are known, and how accurately do you think you will be able to predict disease progression?
I will be working at the Institute of Neurology for the next three years at least. We hope to have first results ready in less than a year, although it may take a longer time for our results from our group and similar results from other groups to be translated into medical practice. MRI provides a more objective assessment of disease progression, as an example it can be used to monitor brain changes in drug trials. Therefore we hope to be able to use MRI to explain disease progression.
Lisa asks: How will the general public be able to access your research results?
I will let the MSIF team know when the results are published, and they will disseminate the information. If you are interested in hearing about the latest research in MS, you can sign up to the MS Research News newsletter.
One question that came up a lot over email was people telling us that even when the MRI shows no new lesions their symptoms are clearly getting worse. They would like to know why this happens.
There are different MRI techniques (which are called MRI sequences). Each of these show different aspects of the disease. However, there is always a part of the disease that is not accessible by MRI, such as inflammation in progressive MS, or subtle functional changes. Moreover lesions are shown using one MRI sequence in clinical practice, and more gradual tissue loss, such as loss of brain cells in grey matter may not be easily seen by clinical MRI. Therefore lesions could only be the tip of the iceberg of the ongoing disease activity.
Reginald says: Since starting on medication the relapse rate has pretty much come to a stop (says the MRI scan) but I feel like the disease is still progressing. Why is this?
Lesions tend to appear less during the progressive stage of MS. Usually at this phase, loss of brain cells (neurons) in addition to spinal cord cells play a more important role to determine disability. Therefore, lesions may not be associated with disability, at least during this stage.
Cathy, via Facebook: how trustworthy are MRIs on prediction of progression?
Currently the progression of MS is defined by changes in clinical symptoms and disability only (for example changes in the distance that you can walk without taking a break), we hope future research on more subtle changes in MRI can change this.
You are right as not all symptoms that patients experience are related to MRI lesions. This is usually known as the paradox between clinical and radiological appearance of the disease. Lesions can only show an aspect of the disease. More subtle changes, such as the shrinkage in the brain, may not be easily picked up, at least with available MRI scanners in clinical centres. Moreover, human brain has a great potential to make up for damage, which makes it more complicated to draw a straight line between lesions and progression. To distinguish between aging and effect of MS in patients during research, we use healthy volunteers at the same age of patients.
Kris from Australia would like to know: Is MRI really effective in diagnosing MS?
MRI is the cornerstone of diagnosing MS, but for a small proportion of patients it doesn’t allow a straightforward diagnosis. These patients may be asked to have further follow up scans after a while to see if their results have changed.
Bergþóra asks: Is MRI suitable enough to determine whether a patient has relapsing-remitting MS or secondary progressive MS and therefore should receive a disease-modifying drug treatment or not?
To define the subtype of MS (RRMS or SPMS), neurologists usually look at the history of patients, and MRI does not play a primary role here. However, in my research we are trying to find the signature of these different subtypes which might help, in future, to explain each MS subtype in a more objective way.
Florence, from Canada is asking: How close are you in determining which individuals with MS are at a higher risk of developing early disability? How accurate do you expect these predictions to be?
Since there are multiple factors to determine the risk of disability, we do not expect to have a high accuracy in determining the risk of progression only relying on imaging. For example, we know that genetic factors, in addition to environmental factors (e.g., exposure to sunlight or some viruses) can play a role. We hope that in the future using a more holistic approach can provide risk of progression for each patient. Current classification of MS is based on clinical assessment and progression and is not based on MRI. MRI can be used to help in the diagnosis. My research could help to give MRI a higher value in determining signature of each MS subtype.
Linda in the US asks: Can you please explain about disease progression regarding MRIs of brain lesions versus spinal cord lesions in determining progression?
In patients with progressive disability, especially physical disability, usually spinal cord is involved, sometimes more than the brain. Lesions in the brain may disrupt normal wiring of the brain, which has an important role in cognitive functioning. Therefore it is expected to see more brain changes on MRI in patients with cognitive complaints.
Karen, from Canada says: I would like to hear about how you can predict cognitive decline with MRI scans.
MRI is increasingly used to explain cognitive problems. Tissue loss in brain, and in particular loss of brain cells (known as neurons) are mainly responsible for this. However in the ongoing project we try to explain disease progression in parallel to clinical progression only (mainly physical disability assessed by neurologist). We hope to gather more MRI data with cognitive assessments for future projects.
You are right that current technologies in MRI may not pick up all the inflammation. This is also very important during the progressive stage of MS, where ongoing inflammation may not appear as lesions on MRI. There are new research papers suggesting that, for example, inflammation could be seen on brain meninges in addition of new contrast agents. However, these newer concepts have yet to be translated into medical practice.
Unfortunately MS is a heterogeneous disease, which means that its course differs among patients even those classified as a single subtype (for example relapsing-remitting or secondary progressive) and this was the main motivation for the current study. The other point is that the course of MS even in one patient tend to be unpredictable. We hope by analysing more than 500 MRI scans from patients with different disease courses (and other studies with genetic data) we might be able to predict disease course at an individual level in future.
Nigel asks via email: What is the value of me knowing my likely rate of progression?
There are lots of new treatments available for MS, and each year we observe new medications for patients. Future course of disease (prognosis) is an important part of decision making for neurologists. If any method can provide a future prediction of disease course it can hugely help care givers to select the best available treatments.
Peter, in the UK: Are you going to be collecting data from people with primary progressive MS?
Although progressive MS has remained in the dark for the past 2 decades, more recent research during the last few years is focusing more on this subtype of MS. For my research, we are including two cohorts of patients with PPMS, and I hope our results will be useful for people with progressive MS as well.
Joanna asks via Facebook: I have secondary progressive MS, is there any research going on?
MSIF is one of the founding members of the International Progressive MS Alliance, a collaboration of 12 MS organisations around the world funding research which we intend will improve our understanding of the disease and remove the barriers to treatment. Have a look here for more information on what we’re doing: www.ProgressiveMSAlliance.org
Massimo asks from Belgium: I have relapsing-remitting MS and have had no relapse in five years, without treatment – does your study includes cases like mine?
Yes. We do include patients with RRMS, and also patients who have had less symptoms at the beginning of their disease (for example clinically isolated syndrome), with more than 10 years of follow up for these patients.
Elizabeth, from the US asks: Does MS progress faster for African-Americans? Will this research target people of colour and give physicians the knowledge to slow the progression of the disease?
African-American patients have a higher number of relapses with a more progressive course, which underlines the role of genetic factors to define the course of MS. My current project does not look at genetic factors. However, the role of genetic factors is increasingly recognised and will be the subject of our future research.
Rosario, from Argentina: Do you use a specific type of MRI scanner for your research? How could your research be compared to MRI scanners in other countries, taking into account different technologies?
The variability in MRI technologies is an important factor to take into account, especially because over time with the advancement of technology they could produce images with different qualities, and may reduce the reliability of acquired scans when compared to previous ones. We are including hundreds of patients from different MRI scanners from around Europe including London, Amsterdam, Siena and Rome, which we believe will increase the generalisability of our results.
Marianthy asks: Do you believe that the more Teslas an MRI scanner has, the more accurate the results will be?
Higher MRI fields (or higher Teslas as you mention) usually provide more details on the MRI scans. However, because of technical difficulties and lack of availability in some countries this might not be practical.
Eric says: I have read that there is a new MRI machine with a stronger magnet that can see grey matter as well as white matter in the brain. How soon before this grey matter imaging is widely available ?
There are new techniques (also known as MRI sequences) that can show lesions in the brain. One of them is called Double Inversion Recovery. Neurologists use this MRI technique to distinguish MS and other similar disorders, and we know that this might be related to disability. The research in different MRI technologies introduces new sequences constantly. However, it takes a longer time for these new sequences to be validated for everyday clinical use. Whether or not MS starts from grey matter is a subject of great controversy. So far we know that grey matter involvement plays an important role to determine progression and course of the disease.