Last updated on November 12th, 2024 at 04:18 pm
The objective of MS-Selfie is to help people with multiple sclerosis (MS) understand the issues they need to consider when managing their disease, for example, when starting or switching between disease-modifying therapies (DMTs). The content of this website is based on published scientific evidence and on the personal and professional opinions and experience of Professor Gavin Giovannoni.
Clinical management of any illness may vary between regions and practitioners; some of the opinions expressed on this website do not necessarily reflect the views of the whole MS community. However, there is widespread support for the goals of preserving tissue in the central nervous system and maximising lifelong brain health by reducing disease activity. For example, the policy report, Brain health: time matters in multiple sclerosis, calls for a timely approach to MS diagnosis and treatment. It has been endorsed globally by leading MS societies, clinics, health professionals and patient organisations. The MS Brain Health initiative – led by Professor Giovannoni – continues to promote the recommendations of this report.
We hope that by using the MS-Selfie website that you will better understand how to take control of and be part of the decision-making around your MS. Before making any important treatment decisions, you will find it helpful to read and consider the answers to the questions below. We have summarised the key content of each post; please follow the links to read the full articles.
1. What is multiple sclerosis?
MS is an autoimmune disease in which the immune system attacks the central nervous system. Its exact cause is unknown; some of the main contributory environmental factors are low vitamin D levels (or lack of sunshine), smoking, Epstein–Barr virus and obesity (particularly in adolescence). Common manifestations of MS include lesions, relapses and intermittent symptoms which often worsen with fatigue. Early treatment is important to help prevent damage to the central nervous system.
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2. Am I sure that I have MS?
The MS misdiagnosis rate is around 5%. A wrong diagnosis of MS may have financial, social and psychological consequences, affecting major life decisions. Moreover, some MS treatments have life-threatening complications and should only be prescribed for people with a clear diagnosis of MS. It is therefore important to get the diagnosis right. The criteria for confirming a suspected MS diagnosis have improved over recent decades and now take account of clinical, electrical, laboratory and magnetic resonance imaging findings.
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3. What should I expect during the diagnostic consultation?
The practice of neurology and medicine varies worldwide. This article explains the process involved in diagnosing MS, the importance of taking time to confirm the diagnosis, and the need for someone newly diagnosed with MS to ask questions and deal with the emotional impact of living with a serious disease. It also provides some guidance on what to do if you think your health concerns are not being taken seriously.
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4. What type of MS do I have?
The different stages of MS are described, and some of the treatment considerations are explained. Despite the many different labels, biologically MS is one disease. From a treatment perspective, the key thing is to know if your MS is active or inactive. Active MS can be differentiated by relapses, MRI evidence of disease activity and raised neurofilament levels in the cerebrospinal fluid. You should be able to classify yourself as having either relapsing MS or non-relapsing progressive MS. Knowing what type of MS has been diagnosed and whether your MS is active or inactive will allow you to ask your MS neurologist questions about the MS treatments available to you.
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5. What prognostic group do I fall into?
It is hard to predict the disease course of MS accurately for an individual. Rather like an actuary working in the insurance industry, we try to give you an average prognosis. There are three broad prognostic MS categories: good, indeterminate or poor. Given sufficient time, most people with MS will do badly without treatment. However, the wide use of DMTs is changing the natural history of MS for the better. Adopting a healthy lifestyle, in parallel with appropriate treatment, can further help to improve outcomes.
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6. What are the consequences of not treating MS?
Untreated MS will, given time, result in physical disability, impaired quality of life and ‘hidden’ problems such as cognitive impairment, anxiety and depression. Brain atrophy, or shrinkage, occurs at a faster rate in people with MS than in healthy individuals. MS lesion development leads to damage in the brain, spinal cord and optic nerve. Quality of life impacts may include reduced mobility, relationship difficulties, increased likelihood of unemployment and memory impairment. Without treatment, the life expectancy of people with MS is reduced by about 6 ̶ 8 years. Although some people with MS have valid reasons for refusing treatment, there are many potential adverse consequences of not treating this neurodegenerative condition.
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7. Do I have active MS?
To qualify for a DMT for MS you must have active disease, that is, new symptomatic or asymptomatic lesions. Different levels of disease activity qualify for different types of DMT. Before deciding to start a DMT, you need to establish if you have active MS. Diagnostic criteria for MS have evolved considerably over the past two decades; this has helped to make treatment decisions earlier and easier, both for MS neurologists and for people with MS.
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8. Am I eligible for an MS disease-modifying therapy?
Regulators such as the European Medicines Agency (EMA) and the Federal Drug Administration (FDA) decide in which group(s) of patients a particular drug can be used, based on the results of clinical trials. Once a drug has been licensed in your region, local payers decide whether to make it available within your country. Therefore, not all DMTs are available worldwide. If you have active MS, then your level of disease activity, its severity and speed of development will determine which DMTs you can be offered. Be sure to discuss the available options with your MS neurologist, so as to manage the long-term trajectory of your MS.
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9. How do I want my MS to be treated?
Two approaches to MS treatment currently favoured are maintenance–escalation and immune reconstitution therapy (IRT). IRT is a one-off, short course that acts on immune system cells in three stages: reduction, repopulation and reconstitution. Maintenance–escalation is given continuously without interruption. Future approaches are likely to include induction ̶ maintenance and/or combination therapy. There are many factors to consider when choosing what is best for you. Understanding the key similarities and differences between the two approaches will help you to participate actively in your treatment decisions.
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10. How immunosuppressed am I?
Immunosuppressive DMTs reduce the immune system’s effectiveness. It is important to weigh up the benefits and risks of short-term versus continuous immunosuppression. Non-selective DMTs suppress the adaptive and innate immune systems; selective DMTs do not affect the innate immune system and are thus associated with a low risk of bacterial infections. The implications of immunosuppression need to be considered within the context of other health and lifestyle factors.
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11. How can I reduce my chances of adverse events on specific DMTs?
Before you start your treatment, your MS team will carry out a series of routine tests that enable them to exclude any unsuitable treatments, manage existing conditions and monitor your progress. This article provides details of the tests needed at baseline and during ongoing monitoring and explains how they help to reduce your chance of adverse events. It is important to remember that all licensed MS DMTs have had a thorough risk ̶ benefit assessment, and their benefits are considered to outweigh the potential risks. Linked to this article is a ‘derisking guide’ in the form of a table summarising the main monitoring requirements of individual DMTs or DMT classes.
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12. Do I understand the concepts of treat-2-target and NEDA?
If you are receiving a DMT, what is the objective or treatment target for your MS? This is a question to be answered before committing yourself to a specific treatment strategy. Key measures of MS disease activity are used to define composite treatment targets; they provide objective means for monitoring and decision-making. This article explores the evolving definitions of NEDA (no evident disease activity) and the issue of treatment failure. Understanding these concepts will help you and your MS team decide whether and when you may need to switch treatment to achieve your agreed target.
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13. What impact does MS have on pregnancy and having children?
MS affects mainly women during their childbearing years and, as a result, impacts pregnancy, family planning and decisions about starting or extending a family. Opinion on this subject is based largely on data that predate the current era of active treatment and the newer generation of disease-modifying therapies (DMTs). I have addressed the many issues around this subject by answering several questions that have arisen in my MS practice over the years.
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14. What are the attributes of the specific DMTs?
Multiple sclerosis (MS) treatment has evolved rapidly, with 11 classes of disease-modifying therapy (DMT) now available in the UK. I will summarise them briefly and explain how they fit within a treatment paradigm for effective and safe use.
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