Multiple sclerosis (MS) is the most common progressive, neurological condition in young adults in Ireland. Approximately 8,000 people have MS in Ireland.
There are four main types of MS:
- relapsing remitting MS
- secondary progressive MS
- primary progressive MS
- benign MS
About the disease
MS is a condition of the central nervous system (the brain and spinal cord). The central nervous system controls the body's actions and activities, such as movement, the senses and cognition.
Each nerve fibre in the central nervous system is surrounded by a substance called myelin. Myelin helps messages from the brain to travel quickly and smoothly to the rest of the body.
In MS, the myelin becomes damaged. This disrupts the transfer of these messages.
Who is affected
MS can occur at any age, but symptoms are mostly first seen between the ages of 20 and 40. Women are more than twice as likely to develop MS as men. It is more common in cooler climates and among Caucasians.
MS is a lifelong condition, but it is not terminal. Most people with MS can expect to live as long as someone without the condition as progression can be slow. However, for some people MS can progressive very rapidly.
Quality of life can sometimes be an issue for people with MS as they may require additional supports and services as their disease progresses and disability becomes a feature. However, for most people this can be managed with adequate support and equipment.
The central nervous system (brain and spinal cord) controls all your body's actions. When MS causes damage to the nerve fibres that carry messages to and from your brain, symptoms can occur in any part of your body. The location of the damage determines the type of symptoms a person may experience.
There are many different symptoms of MS and they affect each person differently. Most people with MS only have a few symptoms and it is very unlikely that someone would develop all possible symptoms.
The symptoms of MS are unpredictable and some people's symptoms develop and worsen steadily over time, while for other people they come and go periodically. Periods when your symptoms get worse are known as relapses. Periods when your symptoms improve or disappear are known as remissions.
In a quarter of cases of MS, the first symptom is inflammation (swelling) of the optic nerve, which transmits visual information to the brain. This is known as optic neuritis and usually only affects one eye. It causes pain behind your eyeball, loss of vision and colour blindness.
MS can also cause double vision, pain in both eyes and difficulty focusing (known as nystagmus).
Fatigue and tiredness
Extreme tiredness (fatigue) may be your main symptom of MS. You may find that fatigue causes your other symptoms (such as problems with balance, vision and concentration) to get worse.
Muscle spasms, spasticity and weakness
MS can cause damage to the nerve fibres in your central nervous system. This can cause your muscles to contract tightly and painfully (spasm). Your muscles may also become stiff and resistant to movement, which is known as spasticity. These can cause weaknesses in your muscles and result in reduced strength.
The two types of pain that can occur as a result of MS are neuropathic and musculoskeletal pain.
- Neuropathic pain is caused by damage to the nerve fibres in your central nervous system. It can be stabbing pains, extreme skin sensitivity or burning sensations.
- Musculoskeletal pain is not caused directly by MS, but can occur if there is excess pressure on your muscles or joints as a result of spasms and spasticity.
MS can affect your balance and co-ordination. It can make walking and moving around difficult, particularly if you also have muscle weakness and spasticity.
- You may experience difficulty with co-ordination, called ataxia.
- Shaking of the limbs (tremor) is rare but can be severe.
- Dizziness can happen late on and can make you feel as if your surroundings are spinning (vertigo).
Cognitive problems refer to problems with mental processes, such as thinking and learning. These usually occur when MS is severe. The problems may be temporary or permanent. You may have trouble remembering and learning new things, problems with attention and concentration, slowed or confused speech, and reduced mental speed.
If you have MS, you may find yourself laughing or crying for no reason, and you may also be more likely to experience depression or anxiety.
MS can make your bladder either overactive or underactive. If it is overactive, your bladder may contract when it is not full, causing incontinence. If it is underactive, you may find that your urine flow is interrupted and your bladder does not feel empty.
MS often causes constipation but may also cause bowel incontinence.
Tingling and Numbness
Altered feelings such as tingling and numbness in the limbs can affect touch and heat sensitivity, particularly in the hands and feet.
Difficulties with arousal and impotence can be made worse with the associated emotional impact they can have on the person and/or their partner
Beyond symptoms MS can impact everyday life in a number of physical and societal ways. For some people family life, employment, relationships, education and travelling can become more challenging, though not impossible.
Types of multiple sclerosis
The symptoms of MS are unpredictable. Some people's symptoms develop and get worse over time, while other people's symptoms come and go periodically.
Periods when your symptoms get worse are known as relapses. Periods when your symptoms improve or disappear are known as remissions.
A relapse in MS is defined as a period of at least 24 hours in which new symptoms appear or previous ones worsen. Relapses can occur at any time and may vary in severity. Sometimes, a short-lived worsening of your symptoms can be caused by other factors, such as hot weather or exercise. This does not necessarily mean that you are having a relapse.
There are different sub-types of MS. They are characterised by the pattern of relapse and remission that the symptoms follow.
- Relapsing remitting MS (RRMS)
Relapsing remitting MS (RRMS) is the most common type of MS. It is characterised by numerous relapses and remissions. Relapses may last for days, weeks or months. You may experience new symptoms each time, or a recurrence of previous ones. After each relapse, you may recover completely. However, many people's symptoms improve but do not disappear altogether.
- Secondary progressive MS (SPMS)
Secondary progressive MS (SPMS) follows on from RRMS. It is characterised by a steady worsening of symptoms, with or without relapses. Studies show that most people with RRMS go on to develop this form of MS, on average 15-20 years after the onset.
- Primary progressive MS (PPMS)
Primary progressive MS (PPMS) is the rarest form of MS. If you have this form of MS, symptoms will get steadily worse with no distinct relapses or remissions.
Benign MS (BMS)
If you have had no symptoms for 10 to 15 years, you may be told that you have benign MS (BMS). Benign MS is characterised by a small number of relapses followed by a complete recovery each time. There is no guarantee that MS is ever gone for good and it is even possible to have a relapse after many years of no symptoms.
Multiple sclerosis (MS) occurs because of damage to the nerve fibres of the central nervous system. Your central nervous system consists of your brain and spinal cord and is responsible for controlling every action, conscious and unconscious, of your body.
When you perform an action, your brain sends messages to the appropriate part of your body through the nerve fibres in your spinal cord. These nerve fibres are covered by a substance called myelin. Myelin insulates the nerve fibres and helps carry messages to and from your brain quickly and smoothly. In MS, the myelin around your nerve fibres becomes damaged. This disturbs the messages coming to and from your brain.
MS is thought to be an autoimmune condition. This means that your immune system mistakes the myelin for a foreign substance and attacks it. The myelin becomes inflamed in small patches (called plaques or lesions), which can be seen on an MRI scan. This process is called demyelination.
Demyelination disrupts the messages travelling along nerve fibres. It can slow them down, jumble them, accidentally send them down a different nerve fibre or stop them from getting through at all.
When the inflammation goes away, it can leave behind scarring of the myelin sheath and sometimes damage to the underlying nerve cell. The progressive types of MS are due to the accumulated damage to these nerve cells.
Why do people develop multiple sclerosis?
MS is thought to be due to an autoimmune condition in which your immune system attacks myelin on the nerve fibres of your central nervous system. It is not understood what causes this autoimmune response, although there are several theories.
Most experts agree that MS is probably caused by a combination of genetic and environmental factors. This means that it's partly due to the genes you inherit from your parents and partly due to outside factors that may trigger the condition.
MS is not defined as a genetic condition because there is no single gene that causes it. It's not directly inherited, although research has shown that people who are related to someone with MS are more likely to develop it. For example, if your mother has MS, you're 40 times more likely to develop it than normal. However, the chances of MS occurring more than once in a family are still very small, and there is only a 2% chance of a child developing MS when a parent has it.
It's likely that different combinations of genes make developing MS more likely, and research into this is continuing. However, genetic theories cannot explain the wide variation in occurrences of MS throughout the world.
Research into MS around the world has shown that it's more likely to occur in countries that are far from the equator. For example, MS is relatively common in the UK, North America and Scandinavia, but hardly ever occurs in Malaysia or Ecuador.
Bacteria and viruses
The reason for the distribution of MS around the world is not fully understood, but it's thought that MS could be triggered by a particular bacteria or virus that thrives in a cooler environment. Some experts believe that a common childhood infection in these cooler countries may disturb the immune system or trigger an autoimmune response in some people, which develops into MS.
As yet, no bacteria or virus has been identified to back up this theory. However, research has shown that people over the age of 15 who move away from countries nearer the equator to a cooler climate have a lower risk of developing MS than those who were born there.
Other research has focused on the idea that people living further from the equator are exposed to less sunlight and, therefore, have less vitamin D in their body. Some studies have found a link between lower levels of vitamin D and incidence of MS.
Some researchers have suggested that vitamin D supplements may reduce the risk of MS. However, this has not been proven.
If you have unexplained symptoms that are similar to those of multiple sclerosis (MS), see your GP. In most cases these symptoms can be attributed to other minor ailments. If your GP suspects MS, they will ask you for a detailed medical history, including past signs and symptoms as well as the current state of your health. Often with MS, seemingly unconnected symptoms, spanning a number of years can be linked together once a medical history is reviewed. It is very common that people with MS experience symptoms long before a diagnosed is given.
Your GP can refer you to a neurologist (a specialist in conditions of the central nervous system). If your GP suspects that you have MS, you should see a neurologist within six weeks.
Diagnosing MS is complicated because no single laboratory test can positively diagnose it. Several conditions have symptoms that are similar to those of MS, so your neurologist may rule them out first.
To confirm a diagnosis of MS, your neurologist may carry out a number of tests.
Your neurologist will look for changes or weakness in your eye movements, leg or hand co-ordination, balance, speech and reflexes. This will show whether any of your nerve pathways are damaged.
Magnetic resonance imaging (MRI) scan
A magnetic resonance imaging (MRI) scan creates a detailed image of your brain and spinal cord. The procedure is painless and usually takes between 10 and 30 minutes. A standard MRI scanner is like a giant tube or tunnel. You may feel claustrophobic when going into the tunnel and the machine is noisy. Tell your neurologist if you have any concerns about this experience.
MRI scans can show whether there is any damage or scarring of the myelin in your central nervous system. Over 90% of people with MS are diagnosed using an MRI scan.
Evoked potentials test
An evoked potentials test involves placing small electrodes on your head. These monitor how your brain waves respond to what you see and hear. It is painless and can show whether it takes your brain longer than normal to receive messages.
A lumbar puncture is also sometimes called a spinal tap. A sample of your cerebrospinal fluid (the fluid that surrounds your brain and spinal cord) is taken using a needle inserted into the area around your spinal cord.
This is done under local anaesthetic, which means that you will be awake but the area that the needle goes into will be numbed. The sample is tested for antibodies, the presence of which means that your immune system has been fighting a disease in your central nervous system.
A lumbar puncture is usually only needed if other tests for MS are inconclusive, or for a diagnosis of primary progressive MS.
Blood tests are usually performed to rule out other causes of your symptoms, such as vitamin deficiencies. In addition, antibody tests may be required, for example to rule out Devic's disease, a condition similar to MS.
Diagnosing the different types of multiple sclerosis
Once a diagnosis of MS has been made, your neurologist may be able to identify which type of MS you have.
However, this often only becomes clear over time as the symptoms of MS are so varied and unpredictable. This is particularly true of benign MS (BMS), which can only be diagnosed once you have been free of symptoms for 10-15 years.
A diagnosis of relapsing remitting multiple sclerosis (RRMS) may be made if:
- you have two relapses of your symptoms more than 30 days apart, or
- you have one relapse and an MRI scan shows new myelin damage or scarring three months later
A diagnosis of secondary progressive multiple sclerosis (SPMS) may be made if:
- you have had relapses of your symptoms in the past, and
- you have become steadily more disabled for at least six months, with or without relapses
A diagnosis of primary progressive multiple sclerosis (PPMS) may be made if you have had no previous relapses of your symptoms, and:
- you have become steadily more disabled for at least one year
- an MRI scan shows damage and scarring to myelin
- a lumbar puncture shows that there are antibodies in the fluid surrounding your brain and spinal cord
In some cases, your neurologist may not be able to say for certain whether you have MS. This can happen when the test results are unclear, for example if your symptoms and lumbar puncture results point towards MS but there is no sign of myelin damage on the MRI scan.
If this is the case, your neurologist may tell you that you have possible MS. This is often referred to as clinically isolated syndrome (CIS). You may have to wait for your symptoms to relapse before a definite diagnosis can be made.
A lesion is an abnormal change in an organ or body tissue because of injury or disease.
The brain controls thought, memory and emotion. It sends messages to the body controlling movement, speech and senses.
MRI stands for magnetic resonance imaging. It is the use of magnets and radio waves to take detailed pictures of inside the body.
Inflammation is the body's response to infection, irritation or injury, which causes redness, swelling, pain and sometimes a feeling of heat in the affected area.
Managing MS is a combination of many factors including pharmaceutical treatments, rehabilitative therapies, a healthy lifestyle, complementary therapies and good supports from family, friends and a variety of state and caring professionals, institutions and departments.
There is no cure for multiple sclerosis (MS). However, there are many treatments that can relieve the symptoms and relapses and may slow the progression of MS.
If you have benign MS (BMS) or your symptoms are very mild, you may not need treatment unless you experience a relapse.
Treatment for MS can be split into three main categories:
- treatment for relapses of MS symptoms (steroids)
- treatment for specific MS symptoms, and
- treatment to slow the progression of MS (disease-modifying medicines)
Treatment for MS relapses
Whenever you experience a relapse of your MS symptoms, see your GP or MS specialist nurse. A recurrence of your symptoms could be due to a secondary cause, such as an infection, so your GP or nurse must identify what's causing the relapse before they treat it.
If your symptoms are due to a relapse, you may be given a three- to five-day course of a high-dose steroid, called methylprednisolone, to help speed up your recovery. This can be given either orally as tablets, or intravenously (injected into a vein). You may receive the treatment in hospital or at home.
It's not fully understood how steroids speed up your recovery from a relapse, but they are thought to suppress your immune system and diminish inflammation so that it no longer attacks the myelin in your central nervous system. They may also help to reduce the amount of fluid around any nerve fibre damage.
As steroids may cause long-term side effects, such as osteoporosis (weak and brittle bones), weight gain and diabetes, you should not take them for more than three weeks at a time. Do not take more than three courses of treatment in a year.
Treatment for specific MS symptoms
If you have MS, you may have several different symptoms, which can vary in severity. There are treatments that can relieve each specific symptom, although some symptoms are more easily treated than others.
If your visual problems are mild - such as having trouble reading - see your optician for an eye test. The problem may not be due to MS. However, if your visual problems are more severe or you have difficulty focusing (nystagmus), you may be prescribed medication called gabapentin.
Muscle spasms and spasticity
Muscle spasms and spasticity can be improved with physiotherapy. Stretching movements can help prevent spasticity (stiffness). You may be referred to a physiotherapist trained in MS treatment if muscle spasms and spasticity are restricting your movements.
If your muscular spasms are more severe, you may be prescribed a medicine that can relax your muscles and reduce spasms. This will usually be either baclofen or gabapentin, although there are alternative medicines, such as tizanidine, diazepam, clonazepam and dantrolene.
These medicines all have side effects, such as dizziness, weakness, nausea and diarrhoea, so discuss which would be best for you with your GP or MS specialist nurse.
In rare cases, medicines may not be enough to control muscle spasms and spasticity. If this is the case, you may be referred for specialist treatment. This may involve wearing special splints or having medication injected into the fluid surrounding your spinal cord.
Neuropathic pain is caused by damage to your nerves and is usually sharp and stabbing. It can also occur as extreme skin sensitivity or a burning sensation. This type of pain can be treated using the medicines gabapentin or carbamazepine, or with an antidepressant called amitriptyline.
You will probably have musculoskeletal pain if you have muscle spasms and spasticity, as it is caused by excess pressure and stiffness in your joints.
A physiotherapist may be able to help with musculoskeletal pain by suggesting exercise techniques or better seating positions. If your pain is more severe, you may be prescribed painkillers (analgesics) or antidepressants (which can also help with pain). Alternatively, you may have a procedure that stimulates your nerve endings, known as transcutaneous electrical nerve stimulation (TENS).
As with musculoskeletal pain, mobility problems are usually the result of muscle spasms and spasicity or muscle weakness. Your joints may tighten, making it hard to move around.
If you have mobility problems, it's best to try to prevent muscle spasms and spasticity in the first place with physiotherapy or medication (see above). Your muscles can tighten to the point where it's painful and difficult to move at all, which is known as a contracture.
If this occurs, you may need to do special stretching exercises with plaster casts and removable splints. You may also be prescribed injections of botulinum toxin, which can help relax your muscles.
Muscle weakness can be helped by strengthening exercises or learning to compensate for weakness by using other muscles.
There are medicines, exercises and equipment that can relieve a tremor (ataxia) or dizziness caused by MS. These are available from your neurological rehabilitation team.
Cognitive problems (difficulty with thought, memory and speech)
If you experience cognitive problems, any treatment you receive will be fully explained and recorded so that it's clear to you.
You should be referred to a clinical psychologist, who will assess your problems and suggest ways to manage them. You may receive treatment from a speech therapist if necessary.
If you experience emotional outbursts, such as laughing or crying for no apparent reason, you should be assessed by a healthcare professional trained in MS symptoms. This could be a clinical psychologist. They may suggest treatment with an antidepressant. If you do not want antidepressants, learning techniques to control your emotions can help.
People with MS who have depression can be treated with antidepressants. If you often feel anxious or worried, your GP or neurologist may prescribe antidepressants or benzodiazepines, which are a type of tranquilliser that have a calming effect. Clinical psychologists can help you with depression by using psychotherapy, such as cognitive behavioural therapy (CBT). If you have severe or persistent depression, you may be referred to a psychiatrist for further advice.
Fatigue and tiredness
Many people with MS experience extreme tiredness. Your GP or MS specialist nurse should assess this to see if there's another reason for your fatigue other than MS, such as medication or poor diet.
If your fatigue is due to MS, you may be prescribed medication called amantadine, although it may only have a limited effect. You should also be given general advice on ways to prevent fatigue, such as exercise and energy-saving techniques.
If you have an overactive bladder, you may be prescribed an anti-cholinergic medicine, such as oxybutynin or tolterodine. This will help make the need to pass urine more predictable. The need to pass urine frequently at night can be treated with a medicine called desmopressin.
If you have an underactive bladder which is not emptying properly, you may undertake intermittent catheterisation or be fitted with a catheter. This is a small tube inserted into your urinary opening that drains away any excess urine.
You may be referred to a continence adviser or urologist, who can offer specialist treatment and advice, such as bladder exercises or electrical treatment for your bladder muscles.
It may be possible to treat mild to moderate constipation by changing your diet or taking laxatives.
More severe constipation may need to be treated with suppositories, which are inserted into your rectum, or an enema. An enema involves having a liquid medication rinsed through your rectum and colon, which softens and flushes out your stools.
Bowel incontinence can be treated with anti-diarrhoea medication or by doing pelvic floor exercises to strengthen your rectal muscles.
Treatment to change the course of the disease
MS cannot be cured, but there are treatments that can reduce the number and severity of relapses. These treatments may also help slow the progression of MS, although research into their long-term effects is limited.
These treatments are injected into your muscle or under your skin or given as an infusion. They can only be prescribed by a neurologist who is part of a specialist neurological rehabilitation team. Your MS specialist nurse or the nurse from the drug company can help you with the injections until you're ready to carry them out yourself.
Disease-modifying medicines reduce the amount of damage and scarring to the myelin in your central nervous system, which cause MS relapses.
Disease-modifying medicines are not suitable for everyone with MS. They are only prescribed to patients with relapse remitting MS (RRMS) and secondary progressive MS (SPMS) who meet certain criteria.
All interferons can cause mild side effects, such as flu-like symptoms (headaches, chills and mild fever) for 48 hours after they are injected. Interferon beta is not suitable for people under the age of 18 or women who are pregnant or breastfeeding. Both women and men are advised to stop using it at least three months before trying for a baby. If you find out that you're pregnant while taking interferon beta, see your GP or MS nurse as soon as possible to discuss an alternative treatment.
Glatiramer acetate is injected under the skin every day. It does not usually cause any noticeable side effects, although in rare cases it may cause tightness in your chest. Glatiramer acetate is only licensed for use by people with relapsing remitting MS (RRMS).
Like interferon beta, glatiramer acetate is not suitable for people under the age of 18, or women who are pregnant or breastfeeding. Both women and men are advised to stop using it at least three months before trying for a baby. If you find out that you're pregnant while taking glatiramer acetate, see your GP or MS nurse as soon as possible to discuss an alternative treatment.
Natalizumab is the most recently licensed disease-modifying medicine for MS relapses . Natalizumab is injected into a vein (intravenously) once every 28 days. It can cause several side effects, including headaches, nausea and vomiting, and an itchy rash. In rare cases, natalizumab has been linked to an increased risk of progressive multifocal leukoencephalopathy (PML). PML is a rare but serious condition that breaks down myelin on nerve fibres, in a similar way to MS. It can cause problems with vision and speech and, eventually, paralysis.
Natalizumab is only licensed for use by people who still have highly active relapsing remitting MS (RRMS) after treatment with interferon beta, or for people who have rapidly evolving RRMS. Rapidly evolving RRMS is defined as having:
- two or more severe relapses within one year, and
- two consecutive MRI scans that show increased damage and scarring to myelin.
Natalizumab is not suitable for people under the age of 18 or over the age of 65, people with cancer, or people with a weakened immune system, such as those who are HIV positive.
Much progress has been made in MS treatment due to clinical trials, where new treatments and treatment combinations are compared with standard ones.
All clinical trials in Ireland are carefully overseen to ensure that they are worthwhile and safely conducted. Participants in clinical trials sometimes do better overall than those in routine care.
If you're asked to take part in a trial, you will be given an information sheet about the trial. If you want to take part, you will be asked to sign a consent form. You can refuse to take part or withdraw from a clinical trial without it affecting your care.
Physiotherapy is a key aspect for managing many of the disabling aspects of MS like muscle spasms, balance, weakness, spasticity and lack of coordination. Regular, tailored physiotherapy can help to maintain or improve functioning as well as help with related effects like fatigue and mood.
Occupational therapy can help people to identify strategies, equipment and supports that can help with daily living. These can include simple tools to help around the house, developing a schedule to maximize energy level, using technology or adapting your living environment.
Speech and language therapy is often used to help people with speech problems or difficulties swallowing.
Other therapists or specialists can also be accessed if needed e.g. pain specialist, incontinence advisor etc.
A healthy lifestyle is important for everyone but for someone with MS a good diet, exercise and a positive mental attitude can help in all manner of ways.
It has been suggested that a diet high in linoleic acid may reduce the duration and severity of MS relapses and slow the progression of MS. However, there isn't enough medical evidence to recommend this treatment.
Ask your GP or dietitian for advice about increasing your intake of linoleic acid. Aim to incorporate 17-23g of linoleic acid into your daily diet. This may not be advisable if you're overweight.
Linoleic acid is found in:
- sunflower spread and oil
- safflower or sesame seed oils
- nuts and seeds, such as walnuts, brazil nuts, peanuts and almonds
- certain supplements, including blackcurrant seed oil, grape seed oil and evening primrose oil
Exercise is highly beneficial to maintain or improve mobility and can help with stress relief. Stress can often trigger symptoms so adopting a good mental attitude is key to staying healthy.
Complementary and alternative therapies for MS
Some people with MS find that complementary therapies help them feel better. Many complementary treatments and therapies claim to ease the symptoms of MS. However, there is no clinical evidence to show that they are effective in controlling MS symptoms.
Many people think that complementary treatments have no harmful effects. However, they can be harmful. If you decide to use an alternative treatment along with your prescribed medicines, it's important to let your doctor know. Before you try a therapy ensure you check out the qualifications of the therapists and research the therapy so you understand the noted benefits and risks.
Supportive family and friends can be of enormous help, both emotionally and practically. Health professionals will offer much information and advice and the state will be able to assist with some of financial and societal impact of MS through benefits and entitlements, community services and hospital services. Many community and charitable organisations may provide specific services. Multiple Sclerosis Ireland, the only national organisation providing information, support and advocacy services to people affected by MS, also provide a range of national and local services.