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Is benign MS benign? #ECTRIMS

Benign multiple sclerosis (MS) is defined as patients that are fully functional in all neurologic systems after 15 years of onset. Amato described the most commonly used definition of patients not exceeding an Expanded Disability Status Scale score (EDSS) of 3.0 after 15 years. However, the definition and existence of benign MS is still a matter of debate.

In the age of earliest possible MS diagnosis, individual prognosis and initiation of DMT the clinical relevance of a ‘benign’ disease course is a pressing question. In a recent German study, researchers set out to provide analysis of benign MS in Germany.

The study analysed 8,794 people with reported benign MS with 15 years or more after disease onset from the German MS-Register. These people were split into two groups, benign with EDSS of three or less and non-benign with EDSS of 3 or more. 3,794 patients fulfilled the criteria of EDSS of three or less. 

The results showed the mean age of onset benign MS was 28.7 years with the majority being females. The mean time from onset to diagnosis was 4.5 years compared to 30.6 years and 4.2 years in the non-benign group.

Within the benign group 92% were RRMS, 6.0% SPMS, 1.6% PPMS. The levels of SPMS and PPMS were higher (45.7%, 9.7%) in the non-benign group. Levels of employment (70%) were higher than in non-benign patient group (34%).

Furthermore, they analysed the benign-subgroup for survival (defined as EDSS three of less), showing, that only about 55% of the benign-PwMS stayed benign for a further 10 years, with males having lesser chances.

Researchers concluded that a high number of patients did fulfil the internationally most commonly used definition of benign MS (43%). In contrast, the low number of benign people with MS after 25 years shows that the time to measure ‘true benignity’ of MS might not be 15 years. The focus on the EDSS in today’s definition of benign MS, which disregards ‘soft or hidden’ symptoms such as fatigue, cognition and emotions, could be a possible explanation. They there feel that a revision of the definition ‘benign MS’ is due.

This study was shared at ECTRIMS 2019, 24th annual conference of rehabilitation in MS, in Stockholm, Sweden.

Source: MS-UK 23/09/19

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