Multiple sclerosis (MS) is a complex condition which can be difficult to understand. It can be good to get the facts and to dispel any misunderstandings about what it means to have MS.
- MS is a disease affecting the central nervous system (the brain and spinal cord)
- More than 100,000 people in the UK have MS
- MS is a life long condition but it is not a terminal illness
- It is not infectious or contagious so it can’t be passed on through meeting someone with MS
- Everyone's MS is different so no two people will have the same range and severity of symptoms, even if they are closely related
Who gets it
- MS is more common in countries further north or south from the equator
- More women than men are diagnosed with MS
- It is usually diagnosed when people are in their 20s and 30s but can be diagnosed in younger and older people.
- MS is not inherited, but family members do have a slightly higher risk of developing MS
Living day to day
- Symptoms can come and go and vary greatly in their impact on someone from day to day, or even from hour to hour
- There may be periods of relapse of varying length and severity
- There are treatments for the symptoms of MS although the condition can’t currently be cured
- Most people diagnosed with MS will never need to use a wheelchair on a regular basis
Myths and misunderstandings about MS
People affected by MS not only have to live with the condition, they also have to contend with myths and misunderstandings about it. Here are a few of them:
MS is a terminal illness
A medical definition of a terminal illness would be “an illness that results in death within a fairly short time. There is no possibility of recovery”. For someone with a terminal illness, death is expected within weeks or months, though sometimes longer.
MS is not a terminal illness but it is a life-long condition. Most people are diagnosed in their 20’s or 30’s and will, on average, live with the condition for 40 to 50 years. Typically, people with MS live until their mid-70’s, a reduction in life expectancy of six to seven years compared with the general population. In recent years, disease modifying drugs have been introduced for people with relapsing MS and they may improve life expectancy in the future as they reduce the number of relapses along with the associated increase in disability.
People who are very severely affected by MS may get more infections, or develop additional health conditions, more easily than other people and they may die from these. This means it’s important for this group to have good care and stay infection-free.
Read more on life expectancy in the A to Z of MS
Once diagnosed you have to give up work
MS is different for everyone. Each person will experience different symptoms at different times and the impact of these symptoms on working life will very much depend on their type of work and their personal experience of MS. On receiving an MS diagnosis, family, friends and even health care professionals might advise someone to stop working. This could be because they don't understand the nature of MS or because they want to protect them from stress. However many people with MS never experience symptoms severe enough to stop them working. People who make big changes or leave the workforce soon after diagnosis or their first major relapse may regret doing so.
Read more on working with MS
You will end up in a wheelchair
For the vast majority of people with MS, this will not be the case. Getting rapidly worse is rare and most people with MS will never need to use a wheelchair on a regular basis.
Read more on equipment that can be helpful when living with MS
You will have to reduce your physical activity
Moderate exercise is recognised as an important element in maintaining general health and wellbeing for everyone, including people with MS. However, many people do not exercise on a regular basis and some people with MS face additional barriers. For example, the symptoms of MS may make some activities more difficult or require a different approach, but there are organisations which offer information and ideas on a range of activities from competitive sports to more leisurely pursuits. There are also exercises which can be done sitting or lying down.
You shouldn't have children
A woman with MS is less likely to have a relapse during pregnancy, although the risk of relapse increases during the six months after the birth. However, pregnancy has no long-term effect on the course of MS and a woman with MS is no more likely to experience miscarriage, stillbirth, birth defects or infant death than a woman who does not have MS. MS is not genetically inherited in the way that eye colour is passed down, although family members do have a slightly increased risk of developing MS. However, that risk is still small.
Read more about pregnancy and MS
This page will be reviewed within three years