Benign multiple sclerosis (MS) is not a term that is used too frequently when talking about this neurological disorder. The definition of benign MS and what it specifically means is something that has been an area of contention in the medical community.
In October of 2017 Multiple Sclerosis News Today published an article that discusses a 30-year study that shows that benign MS does exist. So, what exactly does it say?
First let’s start with the commonly accepted definition of benign MS.
What is benign MS?
MS symptoms and severity can vary among individuals, and the course of the disease can be hard to predict, especially early on. People who have benign MS have the mildest form of the disease. The trouble with diagnosing benign MS is that this diagnosis is based on the amount of time that a person goes without progression of the disease. A benign MS diagnosis can take 15 years to reach. After 15 years of little to no progression, a diagnosis of benign MS can be made by a qualified medical professional. For this diagnosis to be made, there needs to be evidence that the functional ability and MRI scans of the individual have not worsened.
The European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) has been Europe’s largest professional organization dedicated to understanding and treating MS. In October of this year they held a congress in Paris with the Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) to share current research and advances in MS healthcare. ACTRIMS was established in 1995 and comprises of leaders in the area of MS research and treatment in North America.
During the 2017 meeting, Karen K. Chung of the University College London Institute of Neurology discussed study findings on benign MS. The presentation that she gave at the congress was called, “Does ‘benign’ multiple sclerosis exist? A 30-year follow-up study of people presenting with clinically isolated syndrome.”
The study started by tracing members of the London first clinically isolated syndrome (CIS) cohort. CIS is a term that is used to describe the first episodes of clinical features that are suggestive of MS. While patients will usually recover from this first episode, this is often used as the marker for the start of MS. The members of this CIS cohort were assessed either in person clinically or through phone interviews to evaluate how their MS had progressed over a 30-year period. The diagnostic criteria for MS includes looking at clinical symptoms as well as brain imaging over a period of time and space. Researchers used the Expanded Disability Status Scale (EDSS) to quantify the level of disability in the people with MS. The EDSS is a 10-point scale that ranges from no disability and minimal signs in one functional system, to death due to MS. The scoring is done based on an exam by a neurologist. Limitations to the EDSS include subjectivity of the neurologist and arguments that the criteria between steps are not evenly spaced.
There were initially 132 people in the cohort, and at the 30-year follow-up 29 had passed away. Clinical data was gathered from 91 of the remaining 103 people. The results showed that 30 of these people remained at the CIS phase of the disease after 30 years. Relapsing-remitting MS (RRMS) was evident in 35 of the people, and 26 had secondary progressive MS. The individuals who had failed to develop MS (the people who remained in the CIS phase) were excluded from the remainder of the study. Eighty-eight percent of the people with RRMS were able to continue working, or had retired at the normal retirement age, and continued to maintain a relatively good quality of life. They all had an EDSS score less than or equal to three. During the assessment process researchers looked at physical abilities such as arm and leg functions, as well as cognitive abilities. Only 11 of the 61 people who had developed MS had received some sort of disease modifying treatment in the past.
Researchers concluded that “it is not uncommon for people with relapse-onset MS to have only mild or no physical or cognitive dysfunction approximately three decades after clinical onset.” Given the small sample size of the population studied after exclusions had been made, it is necessary that more research be conducted to form a solid conclusion that is representative of the MS population as a whole. The course of MS is unpredictable, but as researchers noted, usually people will have a form of the disease that steadily progresses, or they will maintain a more mild and stable form. Right now, only time can tell.
Coping with the unknown
A diagnosis of any type of chronic and/or progressive disease is often life changing. With MS being diagnosed typically in younger adults, it can be devastating and change someone’s life plans. The unpredictable nature of MS can make this harder. At diagnosis when someone is at the CIS phase, it can be hard and even impossible for providers to know how the disease will progress for the individual in front of them. For the patient, coping with this uncertainty and playing the waiting game can be terrifying and perhaps make them hesitant to make life plans, or want to pack everything in before symptoms worsen. It is important that providers and patients work together to cope with these uncertainties and manage expectations.
The fact that benign MS exists, and that new treatment methods are being researched daily can provide hope for patients, and hope can improve quality of life. Becoming involved in the MS community can also help patients cope. Bonding with people who are going through the same process or who are further along in the process can create a safe space to share concerns and gather inside information.
For some, staying on top of clinical advancements can also be helpful. This can give patients a feeling of control and help them feel empowered about battling MS. The National Multiple Sclerosis Society is a great resource for patients. They offer extensive information about MS that is patient friendly, as well as support and educational resources and other suggestions for improving overall health and quality of life. Their research page can help patients stay up to date on the latest advances and also provides a guide on how patients can get involved in research themselves. Becoming involved in MS research can help people affected by MS, whether friends or family, feel a sense of purpose during the uncertain course of their disease. Patients can get involved in various ways by participating in clinical trials, submitting surveys, DNA samples, arranging for spinal cord and brain donation to a tissue bank, as well as sharing their ideas through organizations that gather information from volunteers. Friends and family who want to be involved in supporting research can work to raise funds and awareness.
If you have been affected by MS either directly or through the diagnosis of a loved one, be sure to seek out support systems. MS is not a hopeless situation, but it can often feel that way at the initial diagnosis. Knowing the facts, staying involved, and taking care of yourself can be helpful for many.