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.

Causes of 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 whether it can be prevented.

What is known so far suggests it’s caused by a combination of genetic and environmental factors.

What happens in MS

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.

Why do people get MS?

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:

  • your genes – MS isn’t directly inherited, but people who are related to someone with the condition are more likely to develop it; the chance of a sibling or child of someone with MS also developing it is estimated to be around 2-3%
  • lack of sunlight and vitamin D – MS is more common in countries far from the equator, which could mean that a lack of sunlight and low vitamin D levels may play a role in the condition, although 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 – it has been suggested that infections, particularly those caused by Epstein-Barr virus (responsible for glandular fever), might trigger the immune system, leading to MS in some people

More research is needed to further understand why MS occurs and whether anything can be done to prevent it.