Multiple Sclerosis: friends & family experiences

What is MS?

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) 

• muscle stiffness that can lead to uncontrolled muscle movements (spasticity) 

• difficulties with balance and co-ordination (known as ataxia) 

• feeling very tired during the day (fatigue)

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 many 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. Most experts think it is a combination of genetic and environmental factors, such as a virus or a series of viruses, lack of vitamin D and other factors.
Types of multiple sclerosis:

Relapsing remitting MS

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 a few months.
Secondary progressive MS

Usually after around 10 years, about 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.
Primary progressive MS

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.
Who gets MS?

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.

What is the treatment for MS?

There is currently no cure for MS but there are a number of treatments that can help. 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 or effective for all people with MS. There is also a wide range of treatments, including steroid injections and physiotherapy, which can help relieve symptoms and make day-to-day living easier. 

For more on treatments see ‘Decisions about treatment

Living with MS

MS can be a challenging and frustrating condition to live with but new treatments over the past twenty years have considerably improved the quality of life of people with the disease. 

For example, many people continue to work for many years after being diagnosed with MS. Others find that MS symptoms make working difficult, or that having MS changes their priorities. This can also be true for the family members of a person with MS. Many people we spoke to combined work with varying degrees of caring for a relative with MS. People with MS and their families may find that during relapses they have to adjust what they do and having a job which offered flexibility to have time off at short notice had been very important for people. Adapting to life with MS can take time. Family members may have to take on more tasks around the home and help the person with MS with some activities. As the disease progresses people with MS may experience more problems with mobility and need more help. This will affect other family members and may require some home adaptations. Living with MS can throw up all kinds of practical issues, and mean that coping financially is more of a challenge. Many advised learning as much as possible about MS and getting information about what help or support is available. Robin said it is vital to get information about resources that can help you. With MS, it's often the little things that can make a difference. Many people said, ‘You’re not alone’ and talked about the importance of asking for help, whether from friends, neighbours, charities or statutory services. The key messages here were, ‘Don’t be frightened to ask for help’ and ‘Be persistent’, as it can be difficult to know your rights and ensure services are provided. ‘Be prepared for the worst,’ Dave said, ‘rejoice when you get something better.’

Is MS fatal?

MS is not fatal, but some complications which can arise from more severe MS, such as pneumonia, can be. The vast majority of people with MS will have a normal life expectancy, but for some people where there is very complicated and advanced disability life expectancy is probably shortened. As a result, the average life expectancy for people with MS is around ten years lower than the population at large.

Last reviewed July 2018.
Last updated July 2018.
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