OBJECTIVES: To describe and to estimate costs of formal and informal home care and quality of life related to multiple sclerosis METHODS: A random sample of 1500 members of the Swedish organization for patients with neurological diseases (NHR), specifically MS, were mailed a questionnaire between February-March 2012. Collected data included number of hours per month of home care received, type of help, productivity losses, quality of life (EQ-5D) and disease characteristics. The recall period was one month. Using published Swedish unit cost data, the costs for home care were estimated in 2012 euros. A semi-logarithmic linear regression evaluated other factors that may influence the likelihood of getting home care. RESULTS: Of 839 respondents, 65.5% had progressive MS, 24.5% had RRMS and 10% had no information. Formal care was given to 27% of respondents at an average of 238.7 hrs/month at a mean cost of €2873 per person with MS per month. Informal care was received by 49% of respondents at an average of 47.3 hrs/month at a mean cost of €389 per person with MS per month. Based on disease severity, the mean total home care costs/patient/month were: mild (EDSS 0-3) = €63, moderate (EDSS 4-6) = €461 and severe (EDSS > 6.5) = €8446. Total home care costs were three-fold higher in persons with moderate MS and seven-fold higher in persons with severe MS versus mild MS. Total home care costs of patients cohabiting with another person were nearly 70% higher compared to people living alone. The reported average utility was 0.513 (sd 0.307). Utilities across disease severity: mild MS=0.709 (sd 0.233), moderate MS=0.562 (sd 0.232) and severe MS=0.284(sd 0.283).  CONCLUSIONS: Total home care costs, of which formal care costs accounted for a large proportion, increased with increasing disease severity. Informal caregiving contributes significantly to MS home care and is an important complement to formal home care in Sweden.