About MS
Expanded disability status scale (EDSS)
To monitor and evaluate your degree of ability and function, your neurologist or MS nurse will most likely use the expanded disability status scale (EDSS), one of the oldest and most widely used assessment tools in MS.(1)
An EDSS score is calculated based on neurological testing and examination of functional systems, which are areas of the central nervous system (CNS) which control bodily functions. The seven functional systems (plus “other”) are (2):
- Pyramidal (ability to walk)
- Cerebellar (coordination)
- Brain stem (speech and swallowing)
- Sensory (touch and pain)
- Bowel and bladder functions
- Visual
- Mental or cognitive
- Other (includes any other neurological findings due to MS)
EDSS scores fall within a clinical rating scale, as shown below; scores are in half-point increments and range from 0 to 10, with higher numbers indicating more severe impairment and disability.
Maintain your ability
Because the course of MS is different for everyone and a person can experience symptom-free periods followed by relapses, not everyone will spend the same amount of time at each stage of the EDSS. Many people will not progress to the next level on the EDSS—where others may have larger changes in disability measures over time.
It’s critical to work with your neurologist to actively maintain a low EDSS score. A low EDSS score means you maintain your ability—meaning you remain fully active and can function on a daily basis. It also means you are able to walk without a cane, crutches or a brace. It means freedom—freedom to work, stay active, and travel. It means being able to be up and about for 12 hours, and most importantly it means independence - the ability to remain self-sufficient. Maintaining a low EDSS can help preserve the dignity that comes from being self-reliant.
Changing the disease course and delaying disability has been made possible with the advent of disease-modifying medications. These therapies work best when started early—especially when EDSS scores are lower (mild-to-moderate disability). To increase your chances of preventing further damage and possible long-term disability it is important to start treatment early. Ultimately, disease-modifying medications can help you maintain both your physical and cognitive abilities.
To understand what an increase on the EDSS represents, speak to your doctor about what maintaining ability means to you and how you can delay disease progression with disease-modifying medications.
Click here to learn more about how to maintain ability; read our guest editorial from Dr. Virender Bhan.
At no time should the information presented replace or supersede the recommendations of your own physician. If you have any concerns, please take the information or questions to your physician.
References:
1. Kurtzke JF. Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS). Neurology. 1983;33(11):1444-52.
2. FSS and EDSS. National Multiple Sclerosis Society. Available at: http://www.nationalmssociety.org/for-professionals/researchers/clinical-study-measures/fss-and-edss/index.aspx.
