Living with multiple sclerosis

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.

Support

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.

Visit Care Information Scotland for more information about the care and support available.

Having a baby

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.

Pregnancy

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.

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 one or more of the following types of financial support:

Driving

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.

Diagnosing multiple sclerosis

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.

Tests for MS

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.

Neurological examination

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. 

Magnetic resonance imaging (MRI) scan

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. 

Evoked potential test

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.

Lumbar puncture

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.

Blood tests

Blood tests are usually performed to rule out other causes of your symptoms, such as vitamin deficiencies or a very rare, but potentially very similar, condition called neuromyelitis optica.

Determining the type of MS

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:

  • the pattern of your symptoms – such as 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 – such as whether there’s evidence that lesions in your nervous system have developed at different times and at different places in your body

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.

Multiple sclerosis (MS)

  1. About multiple sclerosis
  2. Symptoms of multiple sclerosis
  3. Causes of multiple sclerosis
  4. Diagnosing multiple sclerosis
  5. Treating multiple sclerosis
  6. Living with multiple sclerosis

About multiple sclerosis

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.

Symptoms of MS

The symptoms of MS vary widely from person to person and can affect any part of the body.

The main symptoms include:

  • fatigue
  • difficulty walking
  • vision problems, such as blurred vision
  • problems controlling the bladder
  • numbness or tingling in different parts of the body
  • muscle stiffness and spasms
  • problems with balance and co-ordination
  • problems with thinking, learning and planning

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

Getting medical advice

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

Types of MS

MS starts in one of two general ways: with individual relapses (attacks or exacerbations) or with gradual progression.

Relapsing-remitting MS

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.

Primary progressive MS

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.

What causes MS?

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

Treatments for 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:

  • treating relapses with short courses of steroid medication to speed up recovery
  • specific treatments for individual MS symptoms
  • treatment to reduce the number of relapses with medicines called disease-modifying therapies

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.

Read more about how MS is treated and living with MS

Outlook

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.