- Jo's story
- Leonie's story
- Living with multiple sclerosis
- Narinder's story
- Sara's story
Multiple sclerosis (MS) is a disease affecting nerves in the brain and spinal cord, causing problems with muscle movement, balance and vision.
Each nerve fibre in the brain and spinal cord is surrounded by a layer of protein called myelin, which protects the nerve and helps electrical signals from the brain travel to the rest of the body. In MS, the myelin becomes damaged.
This disrupts the transfer of these nerve signals, causing a wide range of potential symptoms, such as:
- loss of vision – usually only in one eye
- spasticity – muscle stiffness that can lead to uncontrolled muscle movements
- ataxia – difficulties with balance and co-ordination
- fatigue – feeling very tired during the day
Read more about the symptoms of multiple sclerosis.
Types of multiple sclerosis
Around 8 out of 10 people with MS will have the relapsing remitting type of MS.
Someone with relapsing remitting MS will have periods of time where symptoms are mild or disappear altogether. This is known as remission and can last for days, weeks or sometimes months.
Remission will be followed by a sudden flare-up of symptoms, known as a relapse. Relapses can last from a few weeks to few months.
Usually after around 10 years, around half of people with relapsing remitting MS will go on to develop secondary progressive MS.
In secondary progressive MS, symptoms gradually worsen and there are fewer or no periods of remission.
The least common form of MS is primary progressive MS. In this type, symptoms gradually get worse over time and there are no periods of remission.
There is currently no cure for MS but there are a number of treatments that can help.
Relapsing remitting MS and secondary progressive MS can be treated with disease-modifying drugs. These are designed to slow the progression of the disease and reduce the number of relapses. But they are not suitable for all people with MS.
For example at the moment, there is no treatment that can slow the progress of primary progressive MS.
There are also a wide range of treatments, including steroid injections and physiotherapy, that can help relieve symptoms and make day-to-day living easier.
Read more about the treatment of multiple sclerosis.
MS is known as an autoimmune condition. This is where something goes wrong with the immune system (the body’s defence against infection) and it mistakenly attacks healthy body tissue – in this case, the myelin covering of nerves.
This can cause multiple sections of the brain and spinal column to become damaged and hardened (sclerosis), which can disrupt the nerve signals passing through these areas.
Exactly what causes the immune system to act in this way is unclear, but most experts think a combination of genetic and environmental factors are involved.
Read more about the possible risk factors and causes of multiple sclerosis.
Who is affected
It is estimated that there are currently around 100,000 people with MS in the United Kingdom.
Symptoms usually first develop between the ages of 15 and 45, with the average age of diagnosis being about 30.
For reasons that are unclear, MS is twice as common in women than men, and more common in white people than black and Asian people
MS can be a challenging and frustrating condition to live with but new treatments over the past 20 years have considerably improved the quality of life of people with the disease.
MS is not fatal, but some complications which can arise from more severe MS, such as pneumonia, can be.
As a result, the average life expectancy for people with MS is around 10 years lower than the population at large.
The central nervous system (brain and spinal cord) controls all of your body's actions. When MS damages the nerve fibres that carry messages to and from your brain, symptoms can occur in any part of your body.
There are many different symptoms of MS and they affect each person differently. Some of the most common symptoms include:
- numbness and tingling
- blurring of vision
- problems with mobility and balance
- muscle weakness and tightness
Most people with MS only have a few of these symptoms and it is unlikely someone would develop all possible symptoms.
The symptoms are unpredictable. Some people's MS symptoms develop and increase steadily over time, while for others, they come and go periodically.
Periods when symptoms get worse are known as relapses. Periods when symptoms improve or disappear are known as remissions.
In around one in five cases of MS, the first noticeable symptom is problems with one of your eyes. You may experience:
- some loss of vision in the affected eye – this can range from mild to severe (total loss of vision occurs in 1 in 35 cases)
- colour blindness
- eye pain; usually made worse when moving the eye
- flashes of light when moving the eye
These symptoms are the result of optic neuritis, which is inflammation (swelling) of the optic nerve that transmits visual information to the brain. This normally only affects one eye.
Other visual problems that can occur in MS include:
- double vision
- eye pain in both eyes
- involuntary eye movements (usually from side to side), known as nystagmus
Abnormal sensations can also be a common initial symptom of MS. This can take the form of numbness or tingling in different parts of your body.
Muscles in your arms and legs may also feel unusually weak.
Muscle spasms and spasticity
MS can damage nerve fibres in your brain and spinal cord, which can cause muscles to contract tightly and painfully (spasm). Your muscles may also become stiff and resistant to movement, which is known as spasticity.
Around half of people with MS experience pain, which can take two forms:
- Neuropathic pain – caused by damage to the nerve fibres in the brain and spinal cord. It can be a stabbing pain, extreme skin sensitivity, or a burning sensation.
- Musculoskeletal pain – this is not caused directly by MS, but can occur if there is excess pressure on muscles or joints as a result of spasms and spasticity.
MS can affect balance and co-ordination. It can make walking and moving around difficult, particularly if you also have muscle weakness and spasticity. You may experience:
- ataxia – difficulty with co-ordination
- tremor – shaking of the limbs, which is rare, but can be severe
- dizziness and vertigo can happen late on and can make you feel as if your surroundings are spinning
Extreme tiredness (fatigue)
Feeling extremely tired (fatigue) is a common symptom of MS that many people describe as one of the most troublesome.
It is estimated as many as 9 out of 10 people with MS will experience episodes of fatigue.
People with MS have reported feeling an overwhelming sense of weariness where even the most simple physical or mental activity seems to be a tremendous struggle to carry out.
Fatigue may be worse in hot weather, after exercising, or during illness.
Problems with thinking, learning and planning
Around half of people with MS have problems with thinking, learning and planning (known as cognitive dysfunction) in the early stages of the disease. They may experience:
- problems understanding and using language
- a shortened attention span
- problems learning and remembering new things (long-term memory is usually unaffected)
- problems understanding and processing visual information, such as reading a map
- difficulty with planning and problem solving – people often report that they know what they want to do, but can’t grasp the method of how to do it
- problems with reasoning, such as mathematical laws or solving puzzles
Mental health issues
Around half of all people with MS experience at least one episode of depression at some point in their life.
It is unclear whether the depression arises from the damage to the brain caused by MS, or 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, especially during the start of a relapse, as they are naturally anxious about the return of their symptoms.
Some people with MS can sometimes experience rapid and severe mood swings, suddenly bursting into tears, laughing or shouting angrily for no apparent reason.
Many people with MS lose interest in sex.
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.
Women may find it more difficult to achieve orgasm.
Bladder problems are common in MS.
These may include:
- difficulty emptying the bladder completely
- having to urinate more frequently
- having a sudden, urgent need to urinate which can lead to unintentionally passing urine (urge incontinence)
- having to get up frequently during the night to pass urine (nocturia)
Constipation affects around half of people with MS. They may pass stools much less frequently than normal, and find this difficult.
Severe constipation can lead to faecal impaction, where a large, solid stool becomes stuck in the back passage (rectum) and begins to stretch the muscles of the rectum, weakening them. This can cause loss of normal bowel control (bowel incontinence), where watery stools leak out.
Multiple sclerosis (MS) occurs because of damage to the nerve fibres of the central nervous system. Your central nervous system consists of the 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 an autoimmune condition. This means 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 completely.
When the inflammation goes away, it can leave behind scarring of the myelin sheath (known as sclerosis) and sometimes damage to the underlying nerve cell.
Why do people develop multiple sclerosis?
It is not understood what causes the immune system to attack myelin, although there are several theories. Most experts agree that MS is probably caused by a combination of genetic and environmental factors. This means it's partly due to 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 people who are related to someone with MS are more likely to develop it.
Researchers have found that if one twin develops MS then the second twin has around a one in four chance of also developing MS.
The chances of a brother, sister, or child of a person with MS also developing MS themselves is less than 1 in 30.
It's possible 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.
Sunlight and vitamin D
Research into MS around the world has shown that it's more likely to occur in countries far from the equator. For example, MS is relatively common in the UK, North America and Scandinavia, but rare in Malaysia or Ecuador.
It’s possible that people living further from the equator are exposed to less sunlight and, therefore, have less vitamin D in their bodies. 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.
Another theory is that MS may be the result of viral infection of the nervous system and /or the immune system.
The idea is that the virus lies dormant for many years and then periodically ‘re-awakens’, triggering an autoimmune response against the nervous system.
This could explain the relapse-remission nature of most cases of MS.
A virus called the Epstein-Barr virus (EBV) is known to act in this way, but there is currently no firm evidence that EBV, or any other virus, is responsible for MS.
Problems with blood flow
A new and controversial theory is that some cases of MS may actually be due to problems with the flow of blood inside the body.
The idea is that some people may have narrowing of veins inside their brain and spinal cord and the blood supply from the brain and spine has trouble returning to the heart (known as cerebrospinal venous insufficiency).
This could lead to a build-up of tiny iron deposits inside nerve tissue, which may damage the nerves and /or trigger an immune response.
Some studies have found higher-than-expected levels of cerebrospinal venous insufficiency in people with MS, but others have not.
Further research is ongoing looking at larger groups of people and using more sophisticated brain imaging scanning.
If you have unexplained symptoms that are similar to those of multiple sclerosis (MS), see your doctor. If your doctor 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.
Your doctor can refer you to a neurologist (a specialist in conditions of the central nervous system).
If your doctor suspects 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 similar to those of MS, so your neurologist may rule them 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 usually only be made with confidence once a person has a relapse (return of symptoms).
To confirm 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 your nerve pathways are damaged.
Magnetic resonance imaging (MRI) scan
An MRI scan creates a detailed image of your brain and spinal cord.
MRI scans can show whether there is any damage or scarring of the myelin in your central nervous system. Over 9 out of 10 people with MS are diagnosed using an MRI scan.
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.
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.
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 a special type of MS called Devic's disease.
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.
A diagnosis of relapsing remitting multiple sclerosis (RRMS) may be made if:
- you have two relapses of your symptoms more than 30 days apart
- 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
- 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 antibodies in the fluid surrounding your brain and spinal cord
The brain controls thought, memory and emotion. It sends messages to the body controlling movement, speech and senses.
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.
A lesion is an abnormal change in an organ or body tissue because of injury or disease.
MRI stands for magnetic resonance imaging. It is the use of magnets and radio waves to take detailed pictures of inside the body.
There is no cure for MS, however, there are many treatments that can relieve symptoms and relapses and which may slow the progression of the condition.
If you have benign MS, or your symptoms are 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
- 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 doctor or MS specialist nurse. A recurrence of your symptoms could be due to a secondary cause, such as an infection, so your doctor 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 so that it no longer attacks the myelin in your central nervous system. They may also help reduce the amount of fluid around any nerve fibre damage.
While steroids can be useful in helping you recover from a relapse they do not have any significant effect in altering the course of the disease or preventing further relapses.
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 doctor 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 weights on your legs, 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 spasticity 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 doctor 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 doctor 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 slow the progression of MS
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. They can only be prescribed by a neurologist who is part of a specialist neurological rehabilitation team. Your MS specialist nurse 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.
The types of interferon beta licensed for use in the UK are interferon beta-1a (Avonex and Rebif) and interferon beta-1b](Betaferon and Extavia). All four brands of interferon beta are given by injection.
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 doctor or MS nurse as soon as possible to discuss an alternative treatment.
One brand of glatiramer acetate, called Copaxone, may be licensed for use. 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 doctor or MS nurse as soon as possible to discuss an alternative treatment.
Natalizumab is the most recently licensed disease-modifying medicine for MS relapses in the UK. It is known by the brand name Tysabri. 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
- 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 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.
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.
Want to know more?
- [Clinical trials for multiple sclerosis]
- Clinical trials and medical research
- Multiple Sclerosis Society: Get involved in research
Complementary and alternative therapies for MS
Some people with MS find 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 they are effective in controlling MS symptoms.
Many people think that complementary treatments have no harmful effects. However, they can be harmful and, as with any complementary or alternative treatment, it's never a good idea to use them instead of the medicines prescribed by your doctor. If you decide to use an alternative treatment along with your prescribed medicines, it's important to let your doctor know.
Diet to modify MS
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 the condition. However, there isn’t enough medical evidence to recommend this treatment.
Ask your doctor 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
A number of newer treatments for MS have been introduced in the last few years. These are discussed below.
A new type of DMD called fingolimod was licensed in 2011. It is designed for people with relapsing remitting MS that appears to be rapidly getting worse.
A practical advantage of fingolimod is that it is available in capsule form, which you take once a day, so you do not have to have injections.
Side effects of fingolimod include:
- persistent coughing
- chest pain
- feeling sick
- being sick
Percutaneous venoplasty is a type of surgery based on the idea that a possible cause of MS is poor blood flow out of the brain due to narrowed veins (read more about the possible causes of multiple sclerosis).
During surgery, a needle is placed through the skin and into one of the narrowed veins. Attached to the needle is a small balloon, which is inflated to widen the vein.
Since news about this type of surgery was made public, percutaneous venoplasty has caused a lot excitement in some sections of the MS community. Some commentators speculated that it could provide a ‘wonder treatment’ for MS.
However, both the main MS charities (the MS Society and the MS Trust) have urged caution. They have pointed out the theory underpinning the surgery is still unproven and there is limited evidence about whether this type of surgery is safe and effective in the long-term.
If you do undergo this type of surgery, it is highly recommended you receive it in a clinical trial.
Jo was diagnosed with multiple sclerosis following the birth of her son. She explains how it affects her body, her ability to move around and her family life, and where to find support.
Leonie Martin, age 45, 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. Here, 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 affect on my symptoms, but soon problems 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 about it and want to learn how to get the best out of your own set of 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."
Living with multiple sclerosis
Relationships and support
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 increasing difficulty with movement and tremors, can make people with MS very frustrated and depressed. Inevitably, their spouse, partner or carer will feel anxious or frustrated, too.
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.
Support If you have any questions, your doctor or MS specialist nurse may be able to reassure you. You may find it helpful to talk to a trained counsellor or psychologist, or to someone at a specialist helpline. Your doctor surgery will have information on these.
Some people find it helpful to talk to other people who have MS, either at a local support group or in an internet chatroom.
Having a baby
Being diagnosed with MS shouldn't affect your ability to have children. However, some medication that's 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 and deliver a healthy baby. Some women find that their pregnancy has a positive effect on their MS and they are less likely to have a relapse of symptoms. Women with MS can have a normal birth and breastfeed afterwards.
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.
Want to know more?
- Multiple Sclerosis Society: MS and pregnancy.
- Multiple Sclerosis Trust: Starting a family.
Money and financial support
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 financial support:
If you've been diagnosed with MS, you must tell your driving licence issuer and also inform your insurance company.
You won't necessarily have to stop driving. You will be asked to complete a form providing more information about your condition, as well as details of your doctors and specialists.
Narinder Kaur-Logue has an aggressive form of relapsing remitting multiple sclerosis. She experiences severely 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.”
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, aged 22. 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 doctor 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 multiple sclerosis.
“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
“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 disease. 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 much worse condition than I am. I consider myself very lucky.”