Multiple sclerosis (MS)

Multiple sclerosis (MS)

Multiple sclerosis (MS) is a condition that affects the brain and/or spinal cord. It can cause symptoms like problems with vision, arm or leg movement, sensation or balance.

It’s a lifelong condition that can sometimes cause serious disability. In many cases, it’s possible to treat symptoms. Average life expectancy is slightly reduced for people with MS.

MS Society estimates that there are more than 130,000 people diagnosed with MS in the UK.

It’s often 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.

Symptoms of multiple sclerosis

Multiple sclerosis (MS) can cause a wide range of symptoms and can affect any part of the body. It affects everyone differently.

The symptoms are unpredictable. Some people’s symptoms develop and worsen 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:

Muscle spasms, stiffness and weakness

MS can cause your muscles to:

• feel weak
• become stiff and resistant to movement (spasticity)
• contract tightly and painfully (spasm)

Vision problems

In around 1 in 4 cases of MS, the first noticeable symptom is a problem with one of your eyes (optic neuritis). You may experience:

• some temporary loss of vision in the affected eye, usually lasting for days to weeks
• colour blindness 
• eye pain, which is usually worse when moving the eye
• flashes of light when moving the eye

You might also experience double vision or involuntary eye movements, which can make it seem as though objects are jumping around.

Abnormal sensations

You might have persistent numbness or tingling in different parts of your body which can last a few days to weeks.

Mobility problems

MS can make walking and moving around difficult, particularly if you also have muscle weakness and spasticity. You may experience:

• clumsiness
• difficulty with balance and co-ordination (ataxia)
• shaking of the limbs (tremor)
• dizziness and vertigo, which can make it feel as though
• everything around you is spinning

Pain

Some people with MS experience pain which can take two forms.

Pain caused by MS itself (neuropathic pain)

This is pain caused by damage to the nervous system, and can include:

• stabbing pains in the face
• stabbing sensations in the torso (body) and limbs
• feeling like you’re burning
• pins and needles
• feeling like you’re being hugged or squeezed

Muscle spasms can sometimes be painful.

Musculoskeletal pain

This can be back, neck and joint pain particularly if you have problems walking or moving around.

Bladder problems

Bladder problems are common in MS. They may include:

• having to pee more often
• having a sudden, urgent need to pee, which can lead to
• unintentionally passing urine (urge incontinence)
• difficulty emptying the bladder completely
• having to get up during the night to pee
• recurrent urinary tract infections

These problems can also have a range of causes other than MS.

Bowel problems

Many people with MS also have problems with their bowel function.

Constipation is the most common problem. You may find passing stools (poo) difficult and pass them much less than normal.

Bowel incontinence is less common, but is often linked to constipation. If a poo 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.

Some of these problems aren’t specific to MS and can be the result of medications.

Sexual problems

MS can have an effect on sexual function.

For women, problems include difficulty reaching orgasm. They might experience decreased vaginal lubrication and sensation.

Men with MS might find it hard to get or maintain an erection (erectile dysfunction). They may also find it takes a lot longer to ejaculate when having sex or masturbating. They might lose the ability to ejaculate altogether.

Both men and women with MS may find they’re less interested in sex than they were before. This could be directly related to MS, a mood disorder like depression, or it could be the result of living with the condition.

Speech and swallowing difficulties

Some people with MS have difficulty chewing or swallowing (dysphagia) at some point. They might also slur their speech or be difficult to understand (dysarthria).

Fatigue

Feeling fatigued is a common and troublesome symptom of MS.

It can cause an overwhelming sense of exhaustion that means it’s a struggle to carry out simple tasks.

Fatigue tends to get worse:

• towards the end of each day
• in hot weather
• after exercising
• during illness

Mental health issues

Many people with MS experience periods of depression. It’s unclear if 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.

Problems with thinking, learning and planning

Some people with MS have problems with thinking, learning and planning. This is known as cognitive dysfunction and can include:

• problems learning and remembering new things although long-term memory is usually unaffected
• slowness in processing lots of information or multi-tasking
• a shortened attention span
• getting stuck on words
• problems with 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 how to do it
• problems with reasoning, such as mathematical laws or solving puzzles

Many of these problems aren’t specific to MS. They can be caused by other conditions, including depression and anxiety or medication.

Speak to your GP if:

• you think you have symptoms of MS

The symptoms can be similar to several other conditions, so they’re not necessarily caused by MS. 

What happens when someone has multiple sclerosis

MS is an autoimmune condition. This 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). This 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 lead to permanent damage.

What causes multiple sclerosis?

Exactly why someone develops multiple sclerosis (MS) isn’t known. It’s not caused by anything you’ve done and it’s not clear if you can prevent it.

It’s likely to be partly caused by genes you inherit from your parents and partly by outside factors that may trigger the condition.

Some of the factors that might cause MS include:

Your genes

MS isn’t directly inherited, but if you’re related to someone with the condition you’re more likely to develop it. The chance of a sibling or child of someone with MS also developing it is around 2-3%.

Lack of sunlight and vitamin D

MS is more common in countries far from the equator. This could mean that a lack of sunlight and low vitamin D levels may play a role in the condition. It’s not clear whether vitamin D supplements can help prevent MS.

Smoking

People who smoke are about twice as likely to develop MS compared to those who don’t smoke.

Viral infections

Infections, particularly those caused by the Epstein-Barr virus, (responsible for glandular fever), might trigger the immune system, leading to MS in some people.

More research will help us understand why MS occurs and whether it can be prevented or not.

Diagnosing multiple sclerosis

It can be hard to tell if you have multiple sclerosis (MS) because some of the symptoms are like other conditions. You may need to rule out other possible causes of your symptoms first.

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.

Some of the tests you may need to confirm MS are:

• neurological examination
• magnetic resonance imaging (MRI) scan
• lumbar puncture
• blood test

Types of multiple sclerosis

Once you have a diagnosis of MS, your neurologist might be able to identify which type of MS you have – either relapsing remitting MS or primary progressive MS.

This will largely be based on:

• the pattern of your symptoms – like whether you experience periods when your symptoms get worse (relapses) then improve (remissions), or whether they get steadily worse (progress)
• the results of an MRI scan

It can take some time to find out which type of MS you have because the symptoms are so varied. It can take a few years to make an accurate diagnosis of progressive MS, as the condition usually worsens slowly.

Treating multiple sclerosis

Phone your specialist MS nurse or GP if:

• you think you’re having a relapse

Treatment with disease-modifying therapies

Although there isn’t a cure for MS, there are medicines that can help to reduce the number and severity of relapses in some people. These are called disease-modifying therapies or disease modifying drugs.

These reduce the amount of damage and scarring to the myelin sheath (layer surrounding your nerves), associated with MS relapses.

These treatments reduce the chances of developing progressive symptoms of MS. They might also help to slow worsening disability in MS.

Disease-modifying therapies are not suitable for everyone with MS. They’re only prescribed to those with either:

• relapsing remitting MS
• secondary progressive MS who meet certain criteria, like the number of relapses they’ve had
• primary progressive MS who meet certain criteria like new lesions found by an MRI scan

People without relapses are less likely to benefit from the treatments and could still experience side effects from them.

Treatment of a relapse of multiple sclerosis

Sometimes an infection can cause a flare up of symptoms rather than a relapse, so your nurse or GP will check for other possible causes.

Treatment for a relapse might involve a five-day course of steroid tablets taken at home.

Steroids can help speed up your recovery from a relapse. They don’t prevent further relapses or stop MS getting worse over time.

Steroids are only given for a short period of time to avoid possible steroid side effects. The side effects could include infection, mood disturbance, stomach ulceration, osteoporosis (weak bones), weight gain and diabetes.

Not using steroids more than three times a year (if possible) will help to reduce the risk of side effects.

Treatment for multiple sclerosis symptoms

There are different treatments available for MS symptoms.

Fatigue

Your healthcare professional should give you advice about ways to manage fatigue. This might include exercise, keeping healthy sleep patterns and energy-saving techniques. Your healthcare professional might suggest avoiding medications that can worsen fatigue.

Specialist fatigue management courses or therapy, such as cognitive behavioural therapy (CBT), might also help.

Visual problems

MS-related visual problems will often improve on their own, usually within a few weeks. If your symptoms are particularly severe, your healthcare professional might prescribe steroids.

If you have problems with involuntary eye movements, medication like gabapentin can sometimes help. Some people with double vision need help from ophthalmologists (eye specialists).

Muscle spasms and stiffness

Physiotherapy can help improve muscle spasms and stiffness.

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, gabapentin or tizanidine.

These medicines all have side effects. You might experience dizziness, weakness, nausea and diarrhoea. Discuss which of these would be best for you with your specialist MS nurse.

Mobility problems

Mobility problems are often the result of muscle spasms and spasticity. Muscle weakness, or problems with balance or dizziness can also cause mobility problems.

If you have problems with mobility, your healthcare professional might suggest:

• an exercise programme supervised by a physiotherapist
• special exercises called vestibular rehabilitation, if you have problems with balance
• medication for dizziness or tremors
• mobility aids, such as a walking stick, or a wheelchair
• home adaptations such as stair lifts or railings

An occupational therapist can carry out an assessment of your home and suggest adaptations.

Musculoskeletal pain

Living with MS can cause stresses and strains to the muscles and joints in your body.

A physiotherapist might be able to help with this pain by suggesting exercises or better seating positions.

If your pain is more severe, you may be prescribed painkillers. Or, you might have a transcutaneous electrical nerve stimulation (TENS) machine that stimulates your nerves.

Neuropathic pain

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 neuropathic painkillers.

Problems with thinking, learning and memory

Your MS healthcare professionals can assess your thinking, learning and memory problems and suggest ways to manage them.

Emotional problems

People with MS who have depression or anxiety can be treated with antidepressants or therapy, such as CBT.

If you have emotional outbursts, such as laughing or crying for no clear reason, you should be assessed by a specialist. They may suggest treatment with an antidepressant.

Bladder problems

Medication might help 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 help some people to start peeing or to empty the bladder.

Sometimes a catheter can empty the bladder when needed. You might be taught how to do intermittent self catheterisation (ISC).

In rare cases, people with MS may need a long-term catheter to keep the bladder emptying safely.

You might be referred to a continence adviser or urologist, for specialist treatment and advice. Read more about treating urinary incontinence.

Bowel problems

It might 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 bottom, or an enema. During an enema, liquid medication is rinsed through your bottom and large bowel, which softens and flushes out your stools.

Anti diarrhoea medication or pelvic floor exercises might help bowel incontinence.

Sexual problems

If you experience problems with less interest in sex or difficulty reaching orgasm, relationship counselling or seeing a sex therapist might help.

If you have MS and find it hard to get or maintain an erection (erectile dysfunction) you may be prescribed medication to increase the blood flow to the penis.

Speech and swallowing difficulties

Complementary and alternative therapies for MS

Some people with MS find that complementary therapies help them feel better. 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 experience problems. It’s not a good idea to use them as an alternative to medicines prescribed by your doctor. If you’re considering an alternative treatment, it’s important to let your doctor know.

Clinical trials

Clinical trials have helped to improve the treatments available for MS.

Speak to your care team if you’re interested in taking part in a clinical trial.

Support for living with multiple sclerosis

Coming to terms with a long-term condition like MS can put a strain on you, your family and your friends. Be honest about how you feel and let your family and friends know what they can do to help.

If you have any questions, your MS nurse or GP can help and will let you know what support is available.

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 assessing your care and support needs.

Having a baby

Being diagnosed with MS shouldn’t affect your ability to have children. Women with MS can have a normal pregnancy, deliver a healthy baby and breastfeed.

Some of the medications prescribed for MS aren’t suitable for taking during pregnancy or breastfeeding and might affect fertility in males and females. If you’re considering starting a family, discuss it with your healthcare team.

Having a baby doesn’t affect the long-term course of MS. Relapses can be less common in pregnancy, but they can be more common in the months after giving birth.

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 might be able to get financial support.

Driving

If you have MS, you must tell the Driver and Vehicle Licensing Agency (DVLA) and inform your insurance company.

You might be able to continue driving, but you’ll be asked to complete a form providing more information about your condition. You’ll be asked for details of your doctors and specialists. The DVLA will use this to decide whether you’re fit to drive.