Impairment and restrictions in possibly benign multiple sclerosis

OBJECTIVE: The aim was to describe a broad range of health dimensions in possibly benign multiple sclerosis (MS) hypothesizing that despite some limitations there is a high adaptation to the disease. METHODS: All patients from an outpatient university clinic data registry with an Expanded Disability Status Scale (EDSS) ≤3.5 and disease duration ≥15 years were addressed in a cross‐sectional study. Physical impairment, neuropsychological functioning but also influence on activities and patient reported outcome measures including coping were studied. RESULTS: One hundred and twenty‐five patients could be included (mean EDSS: 2.8; mean disease duration: 24 years). Cognitive impairment was minor (8%) but fatigue (73%) and depression (46%) were prevalent. Nevertheless, QOL and daily activities seemed to be less affected. Patients showed high social support, coping abilities, and sense of coherence, which was predictive for their perceived benignity of the disease. Based on the EDSS alone, we estimated the rate of benign MS after 15 years of MS as high as 23% decreasing to 16% if cognition was included in the definition. However, cognitive performance was not relevantly associated with other outcomes. CONCLUSION: Common benign MS definitions seem to simplify a complex disease picture where different impairments and personal resources lead to more or less impact on people’s lives.