Multiple Sclerosis is not considered a fatal condition however it is progressive and degenerative, particularly so if untreated or managed. Many people live long and relatively fulfilling with MS if managed well with changes to lifestyle and if available, treatment. Life expectancy for people with MS continues to increase which may be due to advances in treatment, diagnosis, and a better understanding of the impact of a health lifestyle. On average, a person with MS can expect to live 7-10 years fewer than those without MS. Most people find the condition to be very unpredictable with the type, frequency and severity of symptoms varying significantly from one person to another.
According to the 2012-14 NZ MS Incidence Study 88% of those are initially diagnosed with relapsing remitting MS and 12% with progressive MS. Up to 80% of people will eventually convert from relapsing remitting to secondary progressive MS during the course of their condition. Of the 277 participants who were originally recruited as clinically isolated syndrome (CIS – following their first attack or symptom presentation) 35% were subsequently diagnosed as having clinically definite MS during the study period.
For those with relapsing forms of MS there is no predictor as to the frequency or timing of relapses. In some cases people have been known to go for many years, or decades without new relapses. A relapse does not mean that your disability will progress as in most cases following a relapse and a period of recovery there will be no lasting damage. In some cases, depending on the severity and localisation of new brain lesions disability progression may occur. You should keep a record of any relapses and ensure that you discuss these with your health professional. Disease modifying treatments available in New Zealand, in most cases, effectively help to minimise the relapse rate and disability progression.
Currently in New Zealand disease modifying treatments (DMTs) are only available for those with relapsing remitting forms of MS. Where treatments aren’t available not wanted it is important to work with your health professionals and community supports and address lifestyle changes such as diet, sunlight, exercise, and meditation. Read more about available DMTs here.
The nature of progressive MS means that disability will occur much faster however there is no definitive research to predict how this will occur and over what time period. According to a 2005 study a quarter participants with primary progressive MS required a walking cane within 7.5 years however a quarter still did not require one after 25 years. Research also shows that men tend to progress faster than women by 38%. Other studies have shown that from diagnosis to an EDSS score of 6, the median time for secondary progressive groups was 10 years, while it was just three years for the primary progressive group.
Research suggests there are factors that may influence how MS may develop. These have been observed in long-term studies and reflect the trend associated with certain symptoms. They do not represent a guide as to how an individual’s MS will develop as the course of a person’s MS is unique.
Factors that are suggestive of a relatively better disease course are:
It is generally recommended that the longer that you can maintain a healthy brain and lifestyle the better your prognosis.