Health A to Z
Multiple sclerosis (MS) is a condition which can affect the brain and/or spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance.
It's a lifelong condition that can sometimes cause serious disability, although it can occasionally be mild. In many cases, it’s possible to treat symptoms. Average life expectancy is slightly reduced for people with MS.
It's estimated that there are more than 100,000 people diagnosed with MS in the UK.
It's most commonly diagnosed in people in their 20s and 30s, although it can develop at any age. It's about two to three times more common in women than men.
The symptoms of MS vary widely from person to person and can affect any part of the body.
The main symptoms include:
Depending on the type of MS you have (see below), your symptoms may come and go in phases, or get steadily worse over time (progress).
Read more about the symptoms of MS.
See your GP if you're worried you might have early signs of MS.
The early symptoms often have many other causes, so they're not necessarily a sign of MS. Let your GP know about the specific pattern of symptoms you’re experiencing.
If you GP thinks you could have MS, you'll be referred to a neurologist (a specialist in conditions of the nervous system), who may suggest tests such as a magnetic resonance imaging (MRI) scan to check for features of MS.
Read more about diagnosing MS.
MS starts in one of two general ways: with individual relapses (attacks or exacerbations) or with gradual progression.
More than 8 out of every 10 people with MS are diagnosed with the "relapsing remitting" type.
Someone with relapsing remitting MS will have episodes of new or worsening symptoms, known as "relapses". These typically worsen over a few days, last for days to weeks to months, then slowly improve over a similar time period.
Relapses often occur without warning, but are sometimes associated with a period of illness or stress.
The symptoms of a relapse may disappear altogether, with or without treatment, although some symptoms often persist, with repeated attacks happening over several years.
Periods between attacks are known as periods of "remission". These can last for years at a time.
After many years (usually decades), many, but not all people, with relapsing remitting MS go on to develop secondary progressive MS. In this type of MS, symptoms gradually worsen over time without obvious attacks. Some people continue to have infrequent relapses during this stage.
Around half of people with relapsing remitting MS will develop secondary progressive MS within 15-20 years, and the risk of this happening increases the longer you have the condition.
Just over 1 in 10 people with the condition start their MS with a gradual worsening of symptoms.
In primary progressive MS, symptoms gradually worsen and accumulate over several years, and there are no periods of remission, though people often have periods where their condition appears to stabilise.
MS is an autoimmune condition. This is when something goes wrong with the immune system and it mistakenly attacks a healthy part of the body – in this case, the brain or spinal cord of the nervous system.
In MS, the immune system attacks the layer that surrounds and protects the nerves, called the myelin sheath. This damages and scars the sheath, and potentially the underlying nerves, meaning that messages travelling along the nerves become slowed or disrupted.
Exactly what causes the immune system to act in this way is unclear, but most experts think a combination of genetic and environmental factors is involved.
Read more about the causes of MS.
There's currently no cure for MS, but a number of treatments can help control the condition.
The treatment you need will depend on the specific symptoms and difficulties you have. It may include:
Disease-modifying therapies may also help to slow or reduce the overall worsening of disability of MS in people with relapsing remitting MS, and in people with secondary progressive MS who are still having relapses.
Unfortunately, there's currently no treatment that can slow the progress of primary progressive MS or secondary progressive MS in the absence of relapses. Many therapies aiming to treat progressive MS are currently being researched.
MS can be a challenging condition to live with, but new treatments over the past 20 years have considerably improved the quality of life of people with the condition.
MS itself is rarely fatal, but complications may arise from severe MS, such as chest or bladder infections, or swallowing difficulties.
The average life expectancy for people with MS is around 5 to 10 years lower than average, and this gap appears to be getting smaller all the time.
Multiple sclerosis (MS) can cause a wide range of symptoms and can affect any part of the body. Each person with the condition is affected differently.
The symptoms are unpredictable. Some people's symptoms develop and worsen steadily over time, while for others they come and go.
Periods when symptoms get worse are known as "relapses". Periods when symptoms improve or disappear are known as "remissions".
Some of the most common symptoms include:
Most people with MS only have a few of these symptoms.
See your GP if you're worried you might have early signs of MS. The symptoms can be similar to several other conditions, so they're not necessarily caused by MS.
Read more about diagnosing MS.
Feeling fatigued is one of the most common and troublesome symptoms of MS.
It's often described as an overwhelming sense of exhaustion that means it's a struggle to carry out even the simplest activities.
Fatigue can significantly interfere with your daily activities and tends to get worse towards the end of each day, in hot weather, after exercising, or during illness.
In around one in four cases of MS, the first noticeable symptom is a problem with one of your eyes (optic neuritis). You may experience:
Other problems that can occur in the eyes include:
Occasionally, both of your eyes may be affected.
Abnormal sensations can be a common initial symptom of MS.
This often takes the form of numbness or tingling in different parts of your body, such as the arms, legs or trunk, which typically spreads out over a few days.
MS can cause your muscles to:
MS can make walking and moving around difficult, particularly if you also have muscle weakness and spasticity (see above). You may experience:
Some people with MS experience pain, which can take two forms:
Some people with MS have problems with thinking, learning and planning – known as cognitive dysfunction. This can include:
However, many of these problems aren't specific to MS and can be caused by a wide range of other conditions, including depression and anxiety, or even some medications.
Many people with MS experience periods of depression. It's unclear whether this is directly caused by MS, or is due to the stress of having to live with a long-term condition, or both.
Anxiety can also be a problem for people with MS, possibly due to the unpredictable nature of the condition.
In rare cases, people with MS can experience rapid and severe mood swings, suddenly bursting into tears, laughing or shouting angrily for no apparent reason.
MS can have an effect on sexual function.
Men with MS often find it hard to obtain or maintain an erection (erectile dysfunction). They may also find it takes a lot longer to ejaculate when having sex or masturbating, and may even lose the ability to ejaculate altogether.
For women, problems include difficulty reaching orgasm, as well as decreased vaginal lubrication and sensation.
Both men and women with MS may find they are less interested in sex than they were before. This could be directly related to MS, or it could be the result of living with the condition.
Bladder problems are common in MS. They may include:
These problems can also have a range of causes other than MS.
Many people with MS also have problems with their bowel function.
Constipation is the most common problem. You may find passing stools difficult and pass them much less frequently than normal.
Bowel incontinence is less common, but is often linked to constipation. If a stool becomes stuck, it can irritate the wall of the bowel, causing it to produce more fluid and mucus that can leak out of your bottom.
Again, some of these problems aren't specific to MS and can even be the result of medications, such as medicines prescribed for pain.
Some people with MS experience difficulty chewing or swallowing (dysphagia) at some point.
Speech may also become slurred, or difficult to understand (dysarthria).
Exactly why someone develops multiple sclerosis (MS) isn't known. It's not caused by anything you've done and it's not clear whether it can be prevented.
What is known so far suggests it's caused by a combination of genetic and environmental factors.
MS is an autoimmune condition, which means your immune system mistakes part of your body for a foreign substance and attacks it.
In the case of MS, it attacks the myelin sheath in the brain and/or spinal cord. This is the layer that surrounds your nerves, protecting them and helping electrical signals travel from the brain to the rest of the body.
The attacks cause the myelin sheath to become inflamed in small patches (plaques or lesions), which can be seen on a magnetic resonance imaging (MRI) scan.
These patches of inflammation can disrupt the messages travelling along the nerves. It can slow them down, jumble them, send them the wrong way, or stop them from getting through completely. This disruption leads to the symptoms and signs of MS.
When the inflammation goes away, it can leave behind scarring of the myelin sheath (sclerosis). These attacks, particularly if frequent and repeated, can eventually lead to permanent damage to the underlying nerves.
It's not clear what causes the immune system to attack the myelin sheath.
It seems likely that it's partly caused by genes you inherit from your parents and partly by outside factors that may trigger the condition.
Some of the factors that have been suggested as possible causes of MS include:
More research is needed to further understand why MS occurs and whether anything can be done to prevent it.
It can be hard to tell whether your symptoms might be caused by multiple sclerosis (MS) at first, as some of the symptoms can be quite vague or similar to other conditions.
See your GP if you think you have symptoms of MS. Letting them know about the type and pattern of symptoms you're experiencing in detail will help them determine whether you might have the condition.
If your GP thinks you could have MS, you should see a neurologist (a specialist in conditions of the nervous system) for a specialist assessment.
Diagnosing MS is complicated because no single test can positively diagnose it. Other possible causes of your symptoms may need to be ruled out first.
It may also not be possible to confirm a diagnosis if you have had only one "attack" of MS-like symptoms. A diagnosis can only be made with confidence once there's evidence of at least two separate attacks, although this may include signs of attacks on an MRI scan that you may not realise you have had.
Some of the tests you may need to confirm MS are outlined below.
Your neurologist will look for abnormalities, changes or weakness in your vision, eye movements, hand or leg strength, balance and co-ordination, speech and reflexes.
These may show whether your nerves are damaged in a way that might suggest MS.
A magnetic resonance imaging (MRI) scan is a painless scan that uses strong magnetic fields and radio waves to produce detailed images of the inside of the body.
It can show whether there's any damage or scarring of the myelin sheath (the layer surrounding your nerves) in your brain and spinal cord. Finding this can help confirm a diagnosis in most people with MS.
A standard MRI scanner is like a large tube or tunnel. The machine is noisy and some people feel claustrophobic while the scan is done. Tell your neurologist if you're worried about this.
Newer scanners are more open and work quicker than those used in the past, and most people have scans without any problems.
There are several types of evoked potential test.
The most common type assesses how well the eyes work. Light patterns are shown to the eyes while your brainwaves are monitored using small, sticky patches called electrodes placed on your head.
It's a painless test and can show whether it takes your brain longer than normal to receive messages.
A lumbar puncture is a procedure to remove a sample of your spinal fluid by inserting a needle into the lower back. Spinal fluid is the fluid that surrounds your brain and spinal cord, and changes in the fluid can suggest problems with the nervous system.
The procedure is done under local anaesthetic, which means you'll be awake, but the area the needle goes in will be numbed. The sample is then tested for immune cells and antibodies, which is a sign that your immune system has been fighting a disease in your brain and spinal cord.
Lumbar punctures are very safe, but are often uncomfortable and can cause a headache that occasionally lasts for up to a few days.
A lumbar puncture will often be performed to provide extra information if your symptoms or scans are unusual.
Once a diagnosis of MS has been made, your neurologist may be able to identify which type of MS you have.
This will largely be based on:
However, the type of MS you have often only becomes clear over time because the symptoms of MS are so varied and unpredictable. It can take a few years to make an accurate diagnosis of progressive MS, as the condition usually worsens slowly.
Contact your specialist MS nurse or GP if you think you're having a relapse.
A flare up of symptoms can sometimes be caused by something other than a relapse, such as an infection, so your nurse or GP needs to check for other possible causes.
Treatment for a relapse usually involves either:
Steroids can help speed up your recovery from a relapse, but they don't prevent further relapses or stop MS getting worse over time.
They are only given for a short period of time to avoid possible steroid side effects, such as osteoporosis (weak bones), weight gain and diabetes, although some people will still experience problems.
Not using steroids more than three times a year (if possible) will also help to reduce the risk of side effects.
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MS can cause a range of symptoms that can be treated individually. Treatments for some of the main symptoms are outlined below.
Many people with MS experience fatigue.
For fatigue caused by MS, you may be prescribed amantadine, although this medication may only have a limited effect. You should also be given general advice on ways to manage fatigue, such as exercise, keeping healthy sleep patterns, energy-saving techniques and avoiding medications that can worsen fatigue (including some painkillers).
Specialist fatigue management courses or therapy, such as cognitive behavioural therapy (CBT), can also help some people with MS cope with their fatigue.
MS-related visual problems will often improve on their own, usually within a few weeks, so you may not need any treatment. If your symptoms are particularly severe, you may be prescribed steroids to help speed up recovery.
If you have problems with involuntary eye movements, medication such as gabapentin can sometimes help. Some people with double vision need help from ophthalmologists (eye specialists).
Muscle spasms and stiffness (spasticity) can be improved with physiotherapy. Techniques such as stretching exercises can help if your movement is restricted.
If your muscle spasms are more severe, you may be prescribed a medicine that can relax your muscles. 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 of these would be best for you with your specialist MS nurse or GP.
Mobility problems are often the result of muscle spasms and spasticity (see above), but they can also be caused by muscle weakness, or problems with balance or dizziness.
If you have problems with mobility, you might benefit from:
An occupational therapist can carry out an assessment of your home and suggest adaptations that may be of help.
Neuropathic pain is caused by damage to your nerves and is usually sharp and stabbing. It can also occur in the form of extreme skin sensitivity, or a burning sensation.
This type of pain can be treated using the medicines gabapentin or carbamazepine, or with a medication called amitriptyline. This is an older type of antidepressant, but these days it's mainly used for pain control.
Living with MS can cause stresses and strains to the muscles and joints in your body.
A physiotherapist may be able to help with this pain by suggesting exercise techniques or better seating positions.
If your pain is more severe, you may be prescribed painkillers. Alternatively, you may have a device that stimulates your nerves, called as a transcutaneous electrical nerve stimulation (TENS) machine.
If you experience problems with thinking and memory, 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.
If you experience emotional outbursts, such as laughing or crying for no apparent reason, you should be assessed by a specialist such as a clinical psychologist. They may suggest treatment with an antidepressant.
People with MS who have depression can also be treated with antidepressants or therapy, such as CBT.
If you often feel anxious or worried, you may be prescribed antidepressants or benzodiazepines, which are a type of tranquilliser that have a calming effect.
Men with MS who find it hard to obtain or maintain an erection (erectile dysfunction) may be prescribed medication to temporarily increase the blood flow to the penis, such as sildenafil (Viagra). This is provided by the NHS if you have MS.
Relationship counselling or seeing a sex therapist may also help both men and women with MS who are having problems with reduced interest in sex or difficulty reaching orgasm.
Various medications are available if you have an overactive bladder or need to pee frequently during the night.
If you find it difficult to empty your bladder, advice from a continence nurse or physiotherapist can help. Hand-held external stimulators can also help some people to start peeing or to empty the bladder.
Occasionally, a catheter can be used to empty the bladder when needed. In rare cases, people with MS may need a long-term catheter to keep the bladder emptying safely.
You may be referred to a continence adviser or urologist, who can offer specialist treatment and advice, such as botulinim toxin injections, bladder exercises or electrical treatment for your bladder muscles. Read more about treating urinary incontinence.
More severe constipation may need to be treated with suppositories, which are inserted into your bottom, or an enema. An enema involves having a liquid medication rinsed through your bottom and large bowel, which softens and flushes out your stools.
Bowel incontinence can sometimes be treated with anti-diarrhoea medication or by doing pelvic floor exercises to strengthen your rectal muscles.
A speech and language therapist can help you find ways to overcome problems with speech and swallowing.
For example, they can offer advice about foods that are easy to swallow and they can recommend exercises to strengthen the muscles used in speech and swallowing.
If swallowing problems become very severe, some people need to be fed using a tube, which is fitted into the stomach through the skin.
Although MS can't currently be cured, there are medicines that can help to reduce the number and severity of relapses in some people. These are called "disease-modifying therapies".
These aim to reduce the amount of damage and scarring to the myelin sheath (layer surrounding your nerves), associated with MS relapses.
These treatments may also help to slow worsening disability in MS, although definitive research into their long-term benefits is limited.
Disease-modifying therapies are not suitable for everyone with MS. They're only prescribed to those with relapsing remitting MS or secondary progressive MS who meet certain criteria, such as the number of relapses they've had.
People without relapses are very unlikely to benefit from the treatments and could still experience side effects from them.
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The types of beta interferon licensed for use in the UK are interferon beta-1a (Avonex, Rebif and Plegridy) and interferon beta-1b (Betaferon and Extavia). These are all given by injection.
You may be offered treatment with one of these medicines if either:
All beta interferons often cause mild side effects, particularly flu-like symptoms (headaches, chills and mild fever), for 24-48 hours after they’re injected, and temporary pain or redness at the injection site.
One brand of glatiramer acetate, called Copaxone, is licensed for use in the UK. It's injected under the skin either every day or at a higher dose three times a week.
You may be offered treatment with glatiramer acetate if you've got relapsing remitting MS and you've had a recent relapse, and/or MRI scans show that your MS is active.
Common side effects of glatiramer acetate include problems with redness or hardening of the skin at the injection sites, and occasionally palpitations or flushing after the injection.
Teriflunomide, branded as Aubagio, is a tablet taken once a day.
You may be offered treatment with teriflunomide if you have relapsing remitting MS and you've had a recent relapse, and/or MRI scans show that your MS is active.
Common side effects of teriflunomide include headaches, feeling sick, diarrhoea and hair thinning or hair loss. You'll also need blood tests frequently in the early months of treatment to check for problems with liver function.
Natalizumab, branded as Tysabri, is injected into a vein (known as an infusion) once every 28 days.
You may be offered treatment with natalizumab if you have severe relapsing remitting MS that's getting worse quite quickly – for example, if you've had two or more severe relapses within a year and MRI scans show that your MS is getting worse.
The main concern of treatment with natalizumab is a risk of a brain infection called progressive multifocal leukoencephalopathy (PML). This is uncommon, but can become a significant problem with long-term treatment in some people.
Fingolimod, branded as Gilenya, is taken as a capsule once a day.
You may be offered treatment with fingolimod if you have relapsing remitting MS and you experience the same or an increased number of relapses, despite treatment with other medications such as beta interferons.
The medication doesn’t usually cause significant side effects, but some people experience an increased risk of infections, headaches, diarrhoea, liver problems and visual problems.
Alemtuzumab, branded as Lemtrada or Genzyme, is initially given into a vein once a day for five consecutive days. This is followed by a second course of treatment a year later, which lasts for three consecutive days.
You may be offered treatment with alemtuzumab if you've got relapsing remitting MS and you've had a relapse in the past year, and/or MRI scans show that your MS is active.
Common side effects of alemtuzumab include an increased risk of infections, headaches, rashes and fever. Regular blood and urine tests will be carried out to monitor treatment.
Dimethyl fumarate, branded as Tecfidera, is a tablet taken twice a day.
You may be offered treatment with dimethyl fumarate if you've got relapsing remitting MS and you've had a recent relapse and/or MRI scans show that your MS is active.
Common side effects of dimethyl fumarate include hot flushes, diarrhoea, nausea, abdominal (tummy) pain and headaches. Stomach upsets usually settle after a month or so. The flushes can continue, but aren't normally a major issue.
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Much progress has been made in MS treatment thanks to clinical trials, where new treatments and treatment combinations are compared with standard ones.
All clinical trials in the UK are carefully overseen to ensure they are worthwhile and safely conducted. Participants in clinical trials sometimes do better overall than those in routine care.
Speak to your care team if you're interested in taking part in a clinical trial.
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Some people with MS find that complementary therapies help them feel better. Many complementary treatments and therapies claim to ease symptoms, although scientific evidence is often not clear about how effective they are.
Many people think that complementary treatments have no harmful effects. However, people can occasionally experience problems, and it’s not a good idea to use them as an alternative to medicines prescribed by your doctor. If you're considering using an alternative treatment alongside your prescribed medicines, it's important to let your doctor know your plans.
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If you find it difficult to look after yourself, your local authority may be able to provide you with some help. Ask for a care and support needs assessment. For more information, read about:
Coming to terms with a long-term condition such as MS can put a strain on you, your family and your friends. It can be difficult to talk to people about your condition, even if they're close to you.
Dealing with the deterioration of symptoms, such as tremors and increasing difficulty with movement, can make people with MS very frustrated and depressed. Inevitably, their spouse, partner or carer will feel anxious or frustrated as well.
Be honest about how you feel and let your family and friends know what they can do to help. Don't feel shy about telling them that you need some time to yourself, if that's what you want.
If you have any questions, your MS nurse or GP may be able to reassure you or let you know about the other support that's available. You may find it helpful to talk to a trained counsellor or psychologist, or to someone at a specialist helpline.
Some people find it helpful to talk to other people who have MS, either at a local support group or in an internet chatroom.
Care and support services
It's worth taking time to think about your specific needs and what you might need to achieve the best quality of life. For example, if your balance and co-ordination are affected, you may want to think about equipment and home adaptations.
It may be useful to read your guide to care and support. It includes information and advice on:
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Being diagnosed with MS shouldn't affect your ability to have children. However, some of the medication prescribed for MS may affect fertility in both men and women.
If you're considering starting a family, discuss it with your healthcare team, who can offer advice.
Women with MS can have a normal pregnancy, deliver a healthy baby and breastfeed afterwards.
Having a baby doesn't affect the long-term course of MS. Relapses tend to be less common in pregnancy, although they can be more common in the months after giving birth.
You may need to continue taking medication throughout your pregnancy. However, some medication shouldn't be taken during pregnancy, so it's important to discuss this with your healthcare team.
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If you have to stop work or work part-time because of your MS, you may find it hard to cope financially. You may be entitled to one or more of the following types of financial support:
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If you've been diagnosed with MS, you must tell the Driver and Vehicle Licensing Agency (DVLA) and also inform your insurance company.
In many cases, you’ll be able to continue driving, but you’ll be asked to complete a form providing more information about your condition, as well as details of your doctors and specialists. The DVLA will use this to decide whether you're fit to drive.
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Narinder Kaur-Logue has an aggressive form of relapsing remitting multiple sclerosis (MS). She experiences debilitating fatigue on a daily basis and has regular relapses.
Earlier this year, she began having a monthly infusion of the disease-modifying drug (DMD) Tysabri.
"When I was first offered Tysabri, I didn’t want it. I’d heard about people who had died on the trial and didn’t want to put my life at risk. When my doctor explained how isolated those cases were, and that the treatment had finished trials and had been approved for treating aggressive forms of MS, I decided I would give it a go."
Narinder had previously taken Copaxone and Avonex – DMDs that are self-injected.
"I had lots of side affects with Avonex and I hated the daily injections with Copaxone. I felt like I was stabbing myself and sometimes had to ask my husband to do it for me. The monthly infusions for Tysabri are painless and straightforward, and I no longer have the stress of bad injection site bruises."
Narinder’s MS symptoms include fatigue, mobility and vision problems. "I’m unable to work because of my fatigue," she explains. "I tend to get errands and exercise done in the morning, and then come midday my body starts to shut down, fatigue sets in and I can’t do anything other than rest; it’s like flicking a switch".
Tysabri has been known to cause the life-threatening virus progressive multifocal leukoencephalopathy (PML), but risk of developing this is small. Potential side effects of the treatment can include infections, headaches, dizziness, vomiting, nausea, liver damage and infusion reactions. Narinder started receiving the infusions in January and hasn’t experienced any side effects so far (eight months later).
She said: "I can notice a difference in myself and it seems to be keeping some symptoms at bay. My balance has improved; I don’t wobble as much when I stand after sitting and I now have the confidence to wash my hair without someone in the house. I have more energy too. I danced at a party recently – something I haven’t done in a long time."
"I’m lucky that I’ve been able to access Tysabri – I know of others that have had to campaign for months. Tysabri won’t work for everyone; it only treats aggressive forms of relapsing remitting MS and some people may develop side effects or not like the idea of the two-hour hospital infusions once a month, but it’s working well for me at the moment."
Leonie Martin has relapsing remitting multiple sclerosis (MS). She resigned from her job in management seven years ago after a series of relapses and cognitive problems left her unable to carry out her role. She explains how she learnt to manage her symptoms.
"When I was diagnosed with MS I tried to ignore it. I had a busy, hectic lifestyle and a well-paid job in office management at a local school.
"I thought I’d be able to manage my MS and that my lifestyle wouldn’t have any effect on my symptoms, but problems soon started to occur. I would be in the middle of an important presentation when my mind would suddenly go blank. I found concentrating extremely difficult; if I was interrupted while in the middle of something, I would need to start from the beginning again.
"I lost the ability to delegate work to my staff, mainly because I couldn’t keep track of what I’d asked, and I began taking unfinished work home so I could concentrate on it in the evening. I could no longer multi-task and gradually lost all sense of perspective – I would regularly break down in floods of tears at my desk, which was unsettling for my colleagues.
"I knew the problems were connected to my MS, as I’d been doing the job very capably for years – and I think it was because of this that my employer and colleagues struggled to understand. I became anxious, paranoid and depressed, and two years after my diagnosis, decided to leave work. At the time, I was having three relapses a year and my neurologist prescribed me weekly beta interferon injections.
"Following a full neuropsychological assessment by a specialist, I became involved in a cognitive behavioural therapy (CBT) pilot study. The course helped me understand more about managing my symptoms and showed me how to focus more on what I could do rather than what I couldn’t. I learnt to pace myself more and be kinder to myself – refraining from getting angry when I forgot to do something.
"I found that by splitting my day into three sections – morning, afternoon and evening – I could manage my fatigue, and therefore my cognitive problems and mood swings. Now I know that I can’t do something in all three sections, so if I’m out to dinner with friends on an evening, I’ll sleep in the afternoon. I also try to exercise more, but have to ensure I build in a rest period afterwards.
"I’ve learnt more about the types of fatigue and now understand that applying a lot of concentration to something for a period of time can be as exhausting as standing all afternoon. I need to get the right balance and think about my daily choices.
"I’m now self employed as a freelance writer – it’s flexible and has reduced my stress levels and relapses. I haven’t had a major flare-up in three years, but understandably it’s had a major impact on the family in terms of finances.
"Cognitive behavioural therapy worked for me – but it’s not a magic wand. You need to be open-minded and want to learn how to get the best out of your own circumstances. You also have to be prepared to commit time and energy, both during the sessions and at home in between.
"I wish I had known about CBT earlier – I learnt to deal with my symptoms the hard way, but I’m happy that I’ve now found the right balance."
Sara was 22 when she was diagnosed with relapsing remitting multiple sclerosis (MS).
"It all started when I was in my final year of university. I was travelling home from a job interview when somebody stole my purse. It was very upsetting.
"Then I woke the next day and couldn’t see properly. My vision was blurry in my left eye, and I couldn’t see colours clearly. I also had pain behind my eye. I went to the doctor, thinking it would be something like conjunctivitis, but my GP was so concerned that she sent me to hospital that night.
"After a series of tests I was diagnosed with optic neuritis, which is the swelling of the optic nerve. I didn’t realise it at the time, but this is sometimes one of the first signs of MS.
"I then saw a neurologist and had a magnetic resonance imaging (MRI) scan and some really uncomfortable eye tests. I was diagnosed with relapsing remitting MS and felt very scared.
"By this time, it was six months after my initial eye problems and I was struggling to walk. I was weak, shaky and felt a lot of tingling in my body. My parents noticed I was dragging my left leg. But I think these symptoms were linked to stress – it was just after September 11th, and I remember feeling absolutely devastated.
"I was very fortunate. My neurologist thought I was very well-suited for beta interferon injections. Beta interferon is a disease-modifying medicine that reduces the number and severity of MS relapses.
"Three months later, I was approved for this treatment and started my weekly injections. The side effects were absolutely dreadful. I had flu-like symptoms, which began 24 to 48 hours after the injection.
"I’m still on the injections now, aged 30. Fortunately the side effects have now become less severe, although I do still suffer from them. Because the disease and treatment side effects can make you feel lousy, I’m prone to depression, so I also take antidepressants.
"But by looking at me, you’d never know I have the illness. I work full-time for the NHS, and am doing a Masters degree. I find that it really helps to keep a positive mental attitude.
"I still suffer from fatigue and eye problems, and I now wear glasses. Some days, when my leg isn’t working well, I just take it easy. My work colleagues have been very supportive.
"When I go for my hospital check-ups twice a year, I see people in wheelchairs who are clearly in a much worse condition than I am. I consider myself very lucky."