Multiple Sclerosis
MS is a condition of the central nervous system (the brain and spinal cord), which controls the body's actions and activities, such as sensation, movement and balance.
Each nerve fibre in the central nervous system is surrounded by a substance called myelin. Myelin helps the messages from the brain travel quickly and smoothly to the rest of the body. In MS, the myelin becomes damaged, disrupting the transfer of these messages.
There are four main types of MS: benign MS, relapsing remitting MS, secondary progressive MS and primary progressive MS.
The symptoms of the condition are numerous and unpredictable, and they affect each person differently. Some of the most common conditions include problems with mobility and balance, pain, muscle spasms and muscle tightness.
The exact cause of MS is not fully understood, although there is some evidence to suggest that it is caused by a combination of genetic and environmental factors.
There is no cure for MS, but research is continuing into the condition and its causes. However, there are many treatments for MS, which aim to improve the symptoms and make them easier to live with. Treatments include medication and physiotherapy.
MS is a life-long condition, but it is not terminal. People with MS can expect to live as long as anyone else.
Symptoms of multiple sclerosis
There are a wide range of symptoms of multiple sclerosis (MS), which can vary greatly from person to person.
The central nervous system controls all the body's actions, so when MS causes damage to the nerve fibres which carry messages from the brain, symptoms can occur in any part of the body.
However, most people with MS only have a few of these symptoms, and it is very unlikely that someone would develop all of the possible symptoms.
Some of the most common possible symptoms of MS are:
Visual problems
In 25% of cases of MS, the first symptom is inflammation (swelling) of the optic nerve, known as optic neuritis. This usually only affects one eye, and causes pain behind the eyeball and some loss of vision, and can also cause double vision, pain in both eyes, some colour blindness, and difficulty focusing (known as nystagmus).
Muscle spasms and spasticity
Damage to the nerve fibres to muscles (motor neurones), can cause the muscles to contract tightly and painfully (spasm). It is also possible for the muscles to stay contracted and become stiff and resistant to movement, which is known as spasticity.
Pain
There are two types of pain that can occur as a result of MS; neuropathic and musculoskeletal.
- Neuropathic pain is caused by damage to the sensory nerve fibres, and appears as stabbing pains, extreme skin sensitivity or burning sensations.
- Musculoskeletal pain is not caused directly by MS, but can happen if there is excess pressure on the muscles or joints as a result of spasms and spasticity.
Mobility problems
MS can affect balance and coordination, and can cause difficulty in walking and moving around, particularly if muscular spasms and spasticity are present also. Other problems include tremor, or dizziness, which can be quite severe and make it feel like your surroundings are spinning (vertigo).
Cognitive problems
Cognitive problems refer to problems with mental processes such as thinking and learning. There may be trouble remembering and learning new things, problems with attention and concentration, slowed or confused speech, and reduced mental speed.
Emotional problems
Depression or anxiety are common problems alongside MS.
Fatigue and tiredness
Extreme tiredness (fatigue) is often a main symptom. Fatigue worsens other symptoms, such as problems with balance, vision and concentration.
Bladder problems
MS can make the bladder either overactive or underactive. If it is overactive, it may contract when it is not full, causing incontinence. If it is underactive, urine flow can be interrupted and the bladder does not feel empty.
Bowel problems
MS can often cause constipation, but it can also cause bowel incontinence as well.
The symptoms of MS are unpredictable, and some people may find that their symptoms develop and worsen steadily over time, while for others they come and go periodically.
Periods when symptoms get worse are known as relapses, and periods when symptoms improve, or disappear altogether, are known as remissions.
A relapse in MS is defined as a period of at least 24 hours, during which new symptoms appear, or previous ones worsen. Relapses can occur at any time, and may vary in their severity with each recurrence. In some cases, a recurrence or worsening of symptoms can be caused by outside factors such as hot weather, exercise or an infection.
The four types of MS are characterised by the patterns of relapses and remissions that symptoms follow:
- Benign MS (BMS)
- Benign MS (BMS) is the mildest form of MS which is characterised by a small number of relapses followed by a complete recovery each time. However, there is no guarantee that it is ever gone for good.
- Relapsing remitting MS (RRMS)
- Relapsing remitting MS (RRMS) is the most common type of MS, and it is characterised by numerous relapses and remissions. Relapses may last for days, weeks or months, with new symptoms each time, or a recurrence of previous ones.
- After each relapse, there may be complete recovery, but many people's symptoms just improve without disappearing altogether.
- Secondary progressive MS (SPMS)
- Secondary progressive MS (SPMS) is characterised by a steady worsening of symptoms, with or without relapses. Most people who have RRMS go on to develop this form of MS.
- Primary progressive MS (PPMS)
- Primary progressive MS (PPMS) is the most severe form of MS. Symptoms get steadily worse with no distinct relapses, or remissions.
- MS, has implications for driving. See http://www.dvla.gov.uk/medical.aspxrom DVLA.
Why do people develop multiple sclerosis?
Most experts agree that MS is most likely caused by a combination of genetic and environmental factors. This means that it is partly due to genes inherited from parents, and partly due to outside factors which may trigger the condition.
Genetic factors
Genes carry information that determines physical characteristics, such as hair and eye colour. Genetic conditions are caused by a defect or abnormality in a gene, which is passed on to a person and is present in them from birth.
MS is not defined as a genetic condition because there is no single gene that causes it. It is not directly inherited from one member of a family to another, although research shows that people who are related to someone who has MS are slightly more likely to develop it, than those who are not.
However, the chances of MS occurring more than once in a family are very small, and there is only a 2% chance of a child developing MS when a parent has it.
It is possible that there is a combination of genes that make developing MS more likely, and research is continuing into this.
However, the fact that only a relatively small number of people in the general population go on to develop MS suggests that its causes cannot be simply down to genetics.
Environmental factors
Research into MS around the world has shown that it is 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 countries such as Malaysia and Ecuador.
The reason for this is not fully understood, but it is thought that MS could be triggered by a particular bacteria or virus which 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 goes on to develop into MS.
As yet, no bacteria or virus has been identified to back this up. However, research has shown that people over the age of 15 who move away from countries nearer to the equator to a cooler climate, still have a lower risk of developing MS than those who are born there.
Diagnosing multiple sclerosis
If you have unexplained symptoms that are similar to those of multiple sclerosis (MS), see your GP. If MS is suspected, your GP will ask you for a detailed medical history, including your past record of signs and symptoms as well as the current status of your health.
Your GP can then refer you to a neurologist (a specialist in conditions of the central nervous system). Diagnosing MS is complex because there is no single laboratory test that can positively diagnose it. Several other conditions have symptoms that are similar to MS, so your neurologist may have to rule them out first.
Diagnostic tests
In order to confirm a diagnosis of MS, your neurologist may carry out a number of tests that are listed below.
Neurological examination
Your neurologist will look for changes or weakness in your eye movements, leg or hand coordination, balance, speech, and reflexes. This will show whether or not any of your nerve pathways are damaged.
Magnetic resonance imaging (MRI) scan
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
An evoked potentials test involves small electrodes being placed on your head, which monitor brain waves in response to what you see and hear. It is painless and can show whether it takes your brain longer than normal to receive messages.
Lumbar puncture
A lumbar puncture is also sometimes called a spinal tap. A sample of cerebrospinal fluid (fluid that surrounds the brain and spinal cord) is taken under a local anaesthetic, using a needle inserted into the area around your spinal cord. The sample is then tested for antibodies.
A lumbar puncture is usually only needed if other tests for MS are inconclusive, or for a diagnosis of primary progressive 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, but this may only become clear over time, as the symptoms of MS are so varied and unpredictable. This is true of benign MS (BMS), which can only be diagnosed once you have been symptom free for 10-15 years.
There are a different set of diagnostic criteria for the other three types of MS, which are outlined below.
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, or
- 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:
- your have become steadily more disabled for at least one year, or
- 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.
Uncertain diagnosis
In some cases, it may not be able to say for certain whether or not 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, you may have to wait for symptoms to relapse again before a definite diagnosis can be made.
After diagnosis
Being diagnosed with MS can be extremely difficult to deal with. If you, or a loved one has been diagnosed with MS, your neurologist or GP can refer you for counselling with a specialist neurology nurse with knowledge of the condition. You may also to take part in an educational support course about MS.
Treating multiple sclerosis
There is no cure for multiple sclerosis (MS), but there are many treatments available that can relieve the many symptoms and relapses, and may help to slow the progression of the condition.
If you have benign MS (BMS) or your symptoms are very mild, you may not need treatment unless you eventually experience a relapse.
Specialist healthcare services for multiple sclerosis
As MS is such a varied and unpredictable condition, each person who has MS will need a different level of medical care and treatment.
Once you have been diagnosed with MS, you should have a thorough assessment involving specialist nurses, physiotherapists, occupational therapists, speech and language therapists and social workers, who make up a specialist neurological rehabilitation team.
Depending on the amount of care you need, you will receive treatment from one, several or all the members of your local neurological rehabilitation team. They can also help you learn to care and treat yourself as much as possible.
Your first point of contact with your rehabilitation team will usually be a specialist MS nurse.
Every person who has MS should have access to healthcare professionals trained in treating MS, as well as their GP.
Medical and complementary treatments for multiple sclerosis
The treatment for MS can be split into four main categories:
- treatment for relapses of MS symptoms (steroids),
- treatment for specific MS symptoms,
- treatment to slow the progression of MS (disease-modifying medicines), and
- complementary therapies.
Treatment for MS relapses (steroids):
Whenever you experience a relapse of your MS symptoms, you should see your GP or specialist MS nurse. As a recurrence of your symptoms can be due to a secondary cause, such as an infection, your GP or nurse must first identify what is causing the relapse, before treating it accordingly.
If your symptoms are due to a relapse, you may be given a three-to-five-day course of high-dose steroids, known as methylprednisolone, to help speed up your recovery. These can be given either orally as tablets or intravenously (injected into a vein), and you may receive the treatment either in hospital or at home.
Treatments for specific MS symptoms
If you have MS, you may have several different symptoms that vary in severity. There are treatments available that can relieve each specific symptom, although some symptoms are more easily treated than others.
However, it is very unlikely that anyone with MS would develop all of the possible symptoms.
Visual problems:
If your visual problems are mild, such as trouble reading, see your optician for an eye test, as the problem may not be due to MS. However, if your visual problems are more severe or related to nystagmus (difficulty focusing), you may be prescribed medication called gabapentin.
Muscle spasms and spasticity:
Muscle spasms and spasticity can be improved with physiotherapy, as motions such as stretching can help to prevent spasticity (stiffness) occurring. You may be referred to a physiotherapist trained in MS if you find that muscle spasms and spasticity are restricting your movements.
If your muscular spasms and spasticity 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 also stronger medicines, such as tizanidine, diazepam, clonazepam and dantrolene.
These medicines all have side effects, such as dizziness, weakness, nausea, and diarrhoea, so you should discuss which would be best for you with your GP or MS 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 weights on your legs, or having medication injected into the fluid surrounding your spinal cord.
Neuropathic pain:
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 carbamazapine, or amitriptyline.
Musculoskeletal pain:
You will probably have musculoskeletal pain if you experience 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), antidepressants (which can also help with pain), or a procedure which stimulate your nerve endings. This is known as transcutaneous nerve stimulation (TENS).
Mobility problems:
As with musculoskeletal pain, mobility problems are usually the result of muscle spasms and spasticity. You may find that you joints tighten, making it hard to move around.
If you experience mobility problems, it is best to try and prevent muscle spasms and spasticity in the first place, with physiotherapy or medication (see above). It is possible for your muscles to tighten to the point where it is 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 to relax your muscles.
There are also medicines, exercises and equipment which can help to relieve a tremor (ataxia) or dizziness caused by MS, which 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 is clear to you.
You should be referred to a clinical psychologist, who can assess your problems and suggest ways to manage them. You may also receive treatment from a speech therapist if necessary.
Emotional problems:
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, such as a clinical psychologist. They may suggest treatment with an antidepressant, although if you do not want this, learning techniques to control your emotions can also help.
Fatigue and tiredness:
Many people with MS experience extreme tiredness, and your GP or MS nurse should first assess this, to see if there is any other reason for your fatigue other than MS, such as a medication or poor diet.
If your fatigue is due to MS, you may be prescribed a 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.
Bladder problems:
If you have an overactive bladder, you may be prescribed an anti-cholinergic medicine, such as oxybutynin or tolterodine, which will help to make the need to pass urine more predictable. The need to pass urine frequently can be treated with a medicine called desmopressin.
If you have an underactive bladder which is not emptying properly, you may be fitted with a catheter. This is a small tube inserted into your urinary opening that drains away any excess urine.
However, if your bladder problems are more severe, you may be referred to a continence specialist, who can offer specialist treatment and advice, such as bladder exercises or electrical treatment for your bladder muscles.
Bowel problems:
It may be possible to treat mild to moderate constipation by changing your diet or taking laxatives.
However, more severe constipation may need to be treated using suppositories (tablets which are inserted and dissolved inside your rectum), or by having an enema. This involves a liquid medication being 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 slow the progression of MS
MS cannot be cured but there are treatments that can reduce the number and severity of relapses. They may also help to slow the progression of the condition, although research into their long-term effects is limited.
Disease-modifying medicines
These treatments are injected into your muscle or under your skin, and they can only be prescribed by a neurologist who is part of a specialist neurological rehabilitation team. Your MS nurse can help you with the injections until you feel ready to carry them out yourself.
Disease-modifying medicines work by reducing the amount of damage and scarring to the myelin in your central nervous system, which causes MS relapses.
Disease-modifying medicines are not suitable for everyone with MS; they are only prescribed for the treatment of relapsing remitting MS (RRMS) and secondary progressive MS (SPMS). This is because people with these types have the highest number of relapses.
The different types of disease-modifying medicines are outlined below.
Beta interferons (Avonex, Betaferon and Rebif):
There are three brands of beta interferon licensed for use in the UK; Avonex, Betaferon and Rebif. On average, beta interferons can reduce the number and severity of MS relapses by a third.
Avonex is injected once a week into your muscle, Betaferon is injected under your skin every other day, and Rebif is injected under your skin three times a week. Beta interferons can all cause mild side effects, such as flu-like symptoms (headaches, chills, mild fever) for 48 hours after they are injected.
All three beta interferons are licensed to be used by those with relapsing remitting MS (RRMS). Those with secondary progressive MS (SPMS) are licensed to use Betaferon only.
Beta interferons are not suitable for those under the age of 18, or women who are pregnant or breastfeeding. Both women and men are advised to stop using them at least three months before trying for a baby. If you find out that you are pregnant while you are taking a beta interferon, see your GP or MS nurse as soon as possible to discuss an alternative treatment.
Glatiramer acetate (Copaxone):
There is one brand of glatiramer acetate that is licensed for use in the UK, which is called Copaxone. Glatiramer acetate has no effect on the severity of MS relapses, although on average it can reduce the number of relapses by a third.
Copaxone 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. Copaxone is only licensed to be used by people who have relapsing remitting MS (RRMS).
Like beta interferons, Copaxone is not suitable for those 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 are pregnant while you are taking Copaxone, see your GP or MS nurse as soon as possible to discuss an alternative treatment.
Natalizumab (Tysabri):
Natalizumab (Tysabri) is the most recently licensed disease-modifying medicine for MS relapses in the UK, under the brand name Tysabri. On average, natalizumab can reduce the number of MS relapses by two thirds, and can slow the progression of the condition by approximately half.
Tysabri is injected under the skin once every 28 days. However, it can cause several side effects, including headaches, nausea and vomiting and an itchy rash.
In very rare cases, Tysabri has also been linked to an increased risk of progressive multifocal leukoencephalopathy (PML). PML is a rare but serious condition which breaks down myelin on nerve fibres, in a similar way to that of MS. It can cause problems with vision and speech, and eventually, paralysis.
Tysabri is only licensed to be used by those who still have highly active relapsing remitting MS (RRMS) after treatment with a beta interferon, or those who have rapidly evolving RRMS. Rapidly evolving RRMS is defined by:
- two or more severe relapses within one year, and
- two consecutive MRI scans which show increased damage and scarring to myelin.
Tysabri is not suitable for those under the age of 18 or over the age of 65, those who have cancer, or those with a weakened immune system, such as those who are HIV positive.
Linoleic acid:
Linoleic acid is an essential fatty acid, which is found naturally in several foods. There is some medical evidence that suggests that a diet rich in linoleic acid may help to reduce the duration and severity of MS relapses, and slow the progression of MS.
If you have MS, see your GP or dietician for advice about increasing your intake of linoleic acid. You should aim to incorporate 17-23g of linoleic acid into your daily diet, although this may not be advisable if you are 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.
Complementary therapies for MS
There are many complementary treatments and therapies that claim to ease the symptoms of MS. Some of the most common of these include:
- acupuncture - the insertion of thin needles into certain parts of the body to restore health,
- homeopathy - which uses remedies made from ingredients such as plants and minerals, to stimulate the body's own healing process,
- reflexology - a form of massage which focuses on reflex areas on the hands and feet, and
- yoga - a type of exercise that concentrates on different stretches and deep breathing techniques.
Although there are many complementary therapies available for MS, there is very little medical evidence to show that they are effective in controlling MS symptoms.
However, many people with MS find that complementary therapies help them to feel better. There is some evidence, although it is limited, that the following complementary therapies may help to promote general health and well-being in people with MS:
- reflexology,
- massage,
- t'ai chi - a form of martial art which involves slow, rhythmic movements,
- magnetic field therapy - a therapy which uses magnets to improve the body's processes, and
- neural therapy - in which small amounts of local anaesthetic are injected under the skin to improve the body's flow of energy.
Other healthcare issues for people with MS
Immunisations
If you have MS, you should have any of the usual travel vaccinations when you go abroad. You should also ensure that you have an annual flu jab, as getting flu can make MS symptoms worse.
Pregnancy
Having MS does not mean that you cannot have a baby. In fact, being pregnant reduces your risk of relapses.
Women with MS can have a normal pregnancy and breastfeed afterwards if they want to. Pain medication used in childbirth does not affect MS.
Anaesthetics
All types of anaesthetic are safe to use for people with MS.
Useful Links:
Carers: practical support
http://www.nhs.uk/CarersDirect/guide/practicalsupport/Pages/Overview.aspx
Health A-Z: physiotherapy
http://www.nhs.uk/conditions/Physiotherapy/Pages/Introduction.aspx?url=Pages/What-is-it.aspx
Health A-Z: lumbar puncture
http://www.nhs.uk/conditions/Lumbar-puncture/Pages/Introduction.aspx?url=Pages/What-is-it.aspx
Health A-Z: MRI scan
http://www.nhs.uk/conditions/MRI-scan/Pages/Introduction.aspx?url=Pages/What-is-it.aspx
MS Society
http://www.mssociety.org.uk/
MS Trust
http://www.mstrust.org.uk/
RADAR
http://www.radar.org.uk/radarwebsite/
