Lauren Krupp, M.D., and Robert Charlson, M.D.

Battling Lifelong Illness

Multiple Sclerosis and the Self-Perception of Health

Multiple sclerosis study finds perception of health may impact amount of pain

Posted Nov 16, 2017

Multiple sclerosis (MS) is a disease of many and often diverse symptoms. Widely considered an autoimmune disorder, meaning that the immune system of an otherwise normal person is tricked into attacking healthy parts of the body, MS causes damage in many areas of the nervous system. This leads to symptoms that are often different for different people. These include things as seemingly diverse as fatigue, walking problems, depression, cognitive impairment, muscle tightness, or bladder problems.

Given the multiplicity of symptoms, it is tempting to ask: are some symptoms more important than others? Some scientists have begun to wonder. Recently, a large study of MS symptoms was completed at the Multiple Sclerosis Comprehensive Care Center at NYU Langone Health, including over 1,800 self-reported disability scores. These included the various symptoms of MS, but importantly, also how patients rated their own disability.

Intriguingly, in the almost 2,000 patients surveyed, perception of their own health correlated most with pain – a symptom that has increasingly been recognized in MS, but is not even part of most standard MS measures of disability. The second most linked symptom with patients’ perception of their health was walking ability, followed then by fatigue.

MS is a disease where inflammation increasingly can be stopped by powerful new treatments. However, despite these advances, many people with MS continue to struggle with the symptoms of the disease. Both visible (i.e. walking) and invisible (i.e. pain, fatigue) symptoms can lead to worsening perceptions of health in MS. While it’s important to stop relapses or new attacks in MS, it is equally important to listen to people with MS when they talk about their own perceptions of health and wellness in this disease. 

People with MS benefit from having a comprehensive care team in place, and that oftentimes will include a mental health clinician Talk to your doctor who may be able to help or refer you for services.