Why MS is Such a Problem in Maine

Multiple sclerosis (MS) is a chronic, often disabling disease that affects the central nervous system, which is made up of the brain, spinal cord, and optic nerves. With MS, white blood cells attack neurons which damages fatty tissues (myelin) around the nerve fibers in the brain and spinal cord. As a result, nerve signals are slowed or blocked, and MS symptoms occur. 

Symptoms may be mild, such as numbness in the limbs, or severe, such as spasticity, paralysis or loss of vision. The progression, severity, and specific symptoms of MS are unpredictable and vary from one person to another. 

According to the Cleveland Clinic, average prevalence estimates for MS nationally are approximately 90 per 100,000 people. While there is no MS registry in Maine that tracks the prevalence of MS, 3,063 have self-reported their diagnosis to the National Multiple Sclerosis Society. If this number is an accurate estimate of the number of people with MS, Maine has an MS patient population that is significantly larger than the national average.

In addition to the high prevalence of MS in our state, treating the disease in Maine is also a problem for these reasons:
  • Maine has an inadequate number of neurologists, especially in central, eastern, and northern Maine. As a result, many patients opt to go untreated. This is problematic, as many new treatments are being offered.
  • Primary care providers often know very little about how to treat MS.
  • MS patients and their families require access to a full array of coordinated medical, psychosocial and rehabilitation services to address the varied and often complex issues related to living with the disease.
  • There were no comprehensive care centers in eastern, central, or northern Maine for MS. As a result, the services that people with MS require are often not addressed at all, or are not provided in a coordinated manner.
  • Because Maine has a high incidence of poverty, many people cannot easily go elsewhere for care. It is not uncommon for MS patients in Maine to go without any care for their disease.