How is disability measured in the case of MS?
Multiple sclerosis (MS) is an autoimmune disease that affects the central nervous system, leading to a variety of symptoms such as fatigue, vision problems, balance disorders, and cognitive difficulties. In 85% of cases, MS initially progresses with relapsing-remitting episodes of well-defined neurological symptoms separated by remission phases (relapsing-remitting form). Some relapsing forms can evolve into a steady and irreversible worsening of lesions (secondary progressive form). In 15% of cases, especially when the disease begins after age 40, MS is primarily progressive from the onset (primary progressive form) with mainly spinal cord clinical expression, with or without superimposed relapses. In advanced forms, clinical signs tend to worsen and coexist (fatigue, motor, sensory, cognitive, visual, bladder, and sphincter issues), leading to significant disability.
The progression of the disease can vary from person to person, but there are tools to measure the progression of disability caused by multiple sclerosis, including the Expanded Disability Status Scale (EDSS). The EDSS, or Kurtzke Expanded Disability Status Scale, is a widely used tool by neurologists to assess the level of disability in a person with multiple sclerosis. This scale ranges from 0 to 10, where 0 represents no disability and 10 represents death due to multiple sclerosis. The higher the score, the greater the disability.
The EDSS takes into account various aspects of the disease. Specifically, it evaluates 7 neurological functions:
– **Pyramidal function** (broadly motor disorders, considering the walking distance, i.e., the number of meters walked and the need to use aids like a cane);
– **Cerebellar function** (assessed by balance, coordination, and dexterity in rapid movements);
– **Sensory function** (determined by skin sensitivity to touch and abnormal sensations);
– **Brainstem function** (located between the brain and spinal cord, managing basic body functions like breathing, heart rate, swallowing, etc.);
– **Sphincter control** (urinary and bowel disorders);
– **Vision**;
– **Cognitive functions** (memory, concentration, mood, etc.).
By correlating the score of this scale with other tests, such as timed walking tests, neurologists monitor the disease progression in patients, adjust treatments if necessary, and evaluate the effectiveness of interventions. The timing of treatment initiation plays an important role in slowing the progression of MS-related disability. Researchers have found that patients who began treatment at the time of MS diagnosis had better long-term therapeutic outcomes than those who started treatment later. The long-term prognosis was worse for patients receiving no treatment. While MS management includes medication to treat relapses, disease-modifying treatments to slow the disease, and symptomatic treatments for complications (spasticity, pain, bladder, and sexual dysfunctions), non-drug treatments are equally important, including rehabilitation, physical activity, therapeutic education, and medical-social and psychological support. However, from the initial phases of the disease, patients tend to limit or stop physical activity and exercise, linked to their altered physical condition, fatigue, and the unjustified fear of triggering new relapses (false beliefs).
Therefore, it is important to consult healthcare professionals specialized in neurological rehabilitation and adapted physical conditioning to tailor these to your condition and avoid aggravating factors. Contact a specialist in neurological rehabilitation here.