When you are first told that you have multiple sclerosis (MS), you may feel scared, worried, angry, and helpless. You may not want to accept the diagnosis. You may feel as though your own body is betraying you.
MS is an unpredictable disease of the central nervous system whereby the flow of information within the brain, and between the brain and the body is disrupted.1 While MS can cause visible physical disability, it also has hidden or invisible symptoms, such as fatigue and cognitive impairment, including poor memory, attention span, judgment or ability to concentrate.2 Since not all of these symptoms are obvious to those around you, you must talk openly to your family and treatment team about all of the symptoms you are experiencing. As MS stays with you for life, having the right physical care, treatments and emotional support is essential.
Multiple Sclerosis (MS) is an autoimmune disease3 in which the body’s own immune system attacks the nerves in the central nervous system (CNS) which includes your brain, spinal cord, and optic nerves.1
Our nerves have a protective coating called myelin, which helps send messages quickly between the CNS and the rest of the body.4 In MS, for unknown reasons, immune cells attack myelin, which causes inflammation and damage to the protective myelin coating.4 When the myelin becomes damaged, these messages become distorted, slow down, or don’t go through at all.4 This in turn may affect how you see, think, move, and feel.4 MS can also cause damage to the actual nerve fibers and cause disability.4 Symptoms of MS can differ depending on which parts of the CNS are affected4 (see the common symptoms of MS below).
MS can be classified into three different categories.
Relapsing Remitting MS (RRMS)5 - Around 85% of people with multiple sclerosis are diagnosed with RRMS.5 It is possible to experience relapses or episodes of new or worsening of old symptoms. A relapse will be different for each person. The period in between the relapses is known as remission and can last for years.5
Some people diagnosed with RRMS will eventually progress to Secondary Progressive MS (SPMS).5 In this type of MS, symptoms gradually worsen over time with or without relapses.5
Primary Progressive MS (PPMS)5 - PPMS affects about 15% of people diagnosed with MS. In this type of MS, the neurologic function progressively gets worse from the start of experiencing symptoms, without periods of relapse or remission.5
For those who have abnormalities on MRI but no neurological symptoms may be classified as Radiologically Isolated Syndrome (RIS).5 Those who have neurologic symptoms caused by inflammation and demyelination in the CNS but do not meet the criteria for MS may be diagnosed as Clinically Isolated Syndrome (CIS).5
There is no single test to determine if you have MS. Doctors will perform a number of tests, potentially including blood tests, Magnetic Resonance Imaging (MRIs), spinal fluid tests, and more.
Depending on the type of MS you have, symptoms may come and go in phases (relapses), but some may remain or get steadily worse over time.6
Some common symptoms of MS include: 7,8
More than 2.8 million people worldwide live with MS,9 1.2 of whom live in Europe.10
Experts still aren’t sure what exactly causes MS but agree that it is likely a combination of genetic and environmental factors.6 MS is less common in sunny, tropical countries near the equator, and more common in countries farther away from the equator – regardless of someone’s ethnic background.11 Prevalence of MS has been increasing substantially since 1990, particularly in western Europe and North America.12
Most people with MS are diagnosed between the ages of 20 and 50, and women are up to three times as likely as men to be diagnosed with the disease.9 European Multiple Sclerosis Platform (EMSP) states that 80% of MS patients stop working within 15 years of the onset of the disease, as worsening symptoms impact daily activities.13
Dealing with a diagnosis of MS can impact your mental health. Self-care is key. This means taking responsibility for your own health and wellbeing and being open and honest with the people involved in your care about how you’re doing. They may feel anxious, worried and frustrated too. So, let them know how you are feeling and what you need – whether that is more support from them, or simply time for yourself.
It’s important to think about your specific situation, and what you might need to be able to live a healthy and active life.14 Remember that with the right physical and mental care – from yourself and others – you can live a healthy and active independent life.
Have regular check-ups, eat a balanced diet and exercise regularly. This can help reduce fatigue and improve strength, mobility, and bowel and bladder function.14
If you feel that you need support outside of your family or circle of friends, ask your doctor or health care team about counselling or local MS support groups. Staying mentally strong is just as important as staying on top of your physical health.14