What is MS?
Multiple sclerosis is a condition which causes damage to the nerves in your brain and spinal cord (the central nervous system).
‘Sclerosis’ means scarring and refers to the damage to the nerves caused by MS. ‘Multiple’ is added because this can happen in more than one place.
Facts about MS
- MS is a disease affecting the central nervous system (the brain and spinal cord).
- It’s estimated that 130,000 people in the UK have MS.
- Every week around 130 more people are diagnosed.
- It’s nearly three times more common in women than in men.
- Most people are diagnosed in their 20s and 30s but it can be diagnosed in younger and older people.
- MS isn’t infectious or contagious so you can’t catch it or pass it on to other people.
- MS is the most common condition of the central nervous system affecting young adults.
- MS is a life long condition but it is not a terminal illness.
- Everyone's MS is different so no two people will have the same range and severity of symptoms, even if they are closely related.
- MS is more common in countries further north or south from the equator, but it is just as common in Black people as it is in White people.
- MS is not inherited, but family members do have a slightly higher risk of developing MS.
What happens in MS?
Your immune system is your body’s natural defence system which helps your body fight against infections.
Your central nervous system contains nerve cells which process information and communicate messages to and from different areas of your body triggering a response, such as lifting your foot when walking or contracting the muscles in the bladder wall so you can empty your bladder.
In MS your immune system mistakenly attacks your central nervous system. When the attack happens, the immune system targets the protective covering around your nerves (called myelin). This covering is there to protect your nerves and help messages travel along them smoothly.
When myelin is damaged (called demyelination) messages don’t pass along your nerves as efficiently as they used to so messages can be delayed or sometimes may not get through at all. These areas of damage are called lesions and they cause the symptoms you experience.
After an attack your body is able to repair itself to some extent. In the earlier stages of MS, your body has the ability to replace the damaged myelin (called remyelination), although it tends to be thinner than unaffected myelin so the messages may not travel as fast as they did before. Your brain also has the ability to reroute messages to avoid an area of damage so that messages can still get through – this is known as plasticity.
MS is thought to be an autoimmune and neurodegenerative condition. Autoimmune because your body is attacking healthy cells and neurodegenerative because the loss of myelin can leave nerves exposed and more vulnerable to long-lasting damage.
What are the symptoms?
In MS, it’s only the nerves in the brain and/or spine that are damaged. However because these nerves control the functions of the whole body, MS can cause a wide variety of symptoms. Most people will usually experience only a small number around the time of diagnosis and you may never experience all the possible symptoms of MS.
Symptoms vary from person to person and from day to day. This can make your MS rather unpredictable. It’s completely normal for it to take some time to adjust and adapt to this unpredictability going forward in your life.
Some of the most common symptoms around the time of diagnosis are fatigue (a kind of exhaustion which is out of all proportion to the task undertaken), unusual feelings in your skin (such as pins and needles, numbness or burning), problems with eyesight, memory and thinking problems, and walking difficulties (such as tripping, stumbling, weakness or a heavy feeling in your legs).
Many of these symptoms may be invisible to other people. This can mean you look well to others when you’re actually feeling very unwell. Sometimes it can be useful to explain to your family and friends when you’re feeling like this as it may not always be clear to them.
If you experience new symptoms, it’s important to get them checked out by your MS nurse or GP. They may be part of your MS but they could have some other cause. Like everyone else, it’s good to go for routine health tests such as for blood pressure, diabetes and cancer screening.
I’d spent so many sleepless nights googling symptoms and what my MRI results meant that when my neurologist confirmed it was MS, I was glad I finally knew what was going on.
What’s causing these symptoms?
MS symptoms will usually correspond with the areas of your brain and spinal cord that have been damaged, although this isn’t the case for all symptoms.
Symptoms like muscle stiffness and bladder problems are linked to nerve damage in the spinal cord, whereas loss of balance or dizziness are caused by damage to an area in the back of the brain called the cerebellum which controls movement, balance and posture.
Other symptoms, such as fatigue, are not linked to a specific area of damage in your brain or spine. Instead fatigue is thought to be due to nerve messages from the brain and spinal cord having to cope with, and work around, the areas of damage caused by MS. It therefore takes more energy for your body to send and deliver these messages to other parts of the body, like the muscles in your arms and legs, causing a build-up of fatigue.
Read more about MS symptoms
Is everyone's MS the same?
No, everyone’s MS is different. MS is divided into three main types:
- relapsing remitting MS
- secondary progressive MS
- primary progressive MS.
Some neurologists prefer to divide MS into relapsing MS and progressive MS so you may come across this classification too.
Sometimes there can be some doubt as to which type you have, especially when you’re first diagnosed.
Your neurologist may have told you which type of MS you have. If not, you can ask your neurologist or MS nurse at your next appointment although they may not know yet. Keeping a diary with brief notes on any new or changing symptoms can help your neurologist better understand the type of MS you have.
Read more about the types of MS
Can MS be treated?
At the moment, there is no cure for MS but there is a wide range of possible treatments which you can discuss with your health professionals.
- Symptomatic treatments – There are lots of treatments available to treat the symptoms of MS. This includes drug treatments, therapies (such as physiotherapy and occupational therapy), self-management techniques and rehabilitation.
- Disease modifying drugs – There are also drugs that can treat the underlying condition of MS – these are called disease modifying drugs. These work to reduce the number and severity of relapses you may have, and slow down the build-up of disability over time.
- Complementary therapies – Some people with MS choose to use complementary therapies alongside their conventional medicine to help improve their physical and mental wellbeing. These therapies include things like yoga, massage, reflexology and mindfulness.
The diagnosis of MS meant I would get started on treatment and that brought hope that I would get relief from my symptoms.
MS myths and misunderstandings
You may wonder whether you did something to cause your MS or if you could have stopped MS from happening to you. The answer to this is ‘no’ as the causes of MS are not well understood so no one could have advised you how to prevent your MS.
The cause of MS is a very active area of research and it seems likely that a number of different factors must come together to trigger MS. It’s thought that genes make up around half the risk of getting MS. More than 230 genes have been found that each increase the risk of developing MS to a small degree. None of them directly causes the condition itself and someone with MS will have a combination of many of these genes.
Other factors are in the world around us and there is some evidence that lack of sunshine may play a part. Other possibilities include being exposed to certain common viruses, smoking, obesity and long-term exposure to certain solvents.
However no one knows for certain. It’s thought there is still some kind of trigger which hasn’t been identified yet that causes (or activates) MS in those who have a higher risk because of their genes.
Will my family get MS?
MS is not considered an inherited condition as it’s not passed on in a predictable way like some conditions, such as haemophilia or muscular dystrophy, and many people have no previous family history of MS. Some genes make it more likely that someone develops MS but having these genes is definitely not enough on its own as other factors are needed to trigger the condition. This means that the risk of another member of your family getting MS is small.
Can I have children?
MS rarely affects a woman’s ability to get pregnant, carry a child or give birth. A woman with MS is less likely to have a relapse during pregnancy, although the risk of relapse increases during the six months after the birth. Pregnancy does not affect how someone’s MS develops in the long term.
There is no evidence that MS affects male fertility directly although sometimes symptoms include erectile dysfunction.
If you’re planning to have children, it’s best to discuss this with your MS nurse or your GP, especially as most medications are not recommended during pregnancy.
How much will MS affect me?
After diagnosis, it’s natural to wonder what MS might mean for your future. Everyone’s MS is different so no one can predict how much your MS might, or might not, affect you.
MS is a lifelong condition but it is rarely fatal. Most people with MS live into old age although their lifespan, on average, is about six years less than the general population.
Life goes on, maybe not exactly as you’d planned or dreamed it would.
Will I become disabled?
It’s possible that MS may impact on what you can do in the future and you may need to adapt to these changes and learn to do certain activities in your life differently.
Although MS can cause some disability, most people never need to use a wheelchair on a regular basis. The treatment and care of people with MS is improving so people diagnosed with MS today can expect a better quality of life than was possible previously.
Some people find that their MS only has a small impact on their daily lives and they can continue with their usual hobbies and working life. They may show no obvious signs of their condition. Others have more intrusive symptoms which can have a much bigger impact and may result in reducing working hours or needing more help around the home.
If you already know someone with MS, you may be tempted to assume that your MS will be the same as theirs. This is unlikely as everyone’s MS is different. This is true even if you are closely related to them.
If you are more severely affected you may get more infections than healthier people and can develop complications that affect breathing and circulation. This can decrease your life expectancy so it’s important to keep as well as possible and seek treatment promptly.
How is MS treated?
Find out about the different types of treatments for MS, when to seek treatment and the support that's available to you.
What happens after diagnosis?
You've been diagnosed with MS, what happens next? This information covers how you might feel after diagnosis and where to get support.