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EDSS: Tracking MS Progression

Updated on July 27, 2021
Medically reviewed by
Evelyn O. Berman, M.D.
Article written by
Ryan Chiu, M.D.

  • Your score on the Expanded Disability Status Scale (EDSS) may be used to assess how multiple sclerosis (MS) affects you now, how it changes over time, and how it may progress in the future.
  • Your doctor may consider your EDSS score when determining which MS treatments are likely to be most effective for you.
  • EDSS focuses mainly on mobility. Other disability scales can be used to assess other types of MS symptoms.

Multiple sclerosis can cause symptoms in virtually every part of your body — visual problems, cognitive issues, numbness, weakness, and bowel and bladder issues — all of which can lower your quality of life. For people with relapsing-remitting multiple sclerosis, these problems come in waves. Those with primary progressive multiple sclerosis or secondary progressive multiple sclerosis experience slowly worsening symptoms over time.

If MS can affect people in very different ways, how are doctors able to accurately track the clinical course of a person’s unique diagnosis? Neurologists and other health care professionals use the Kurtzke Expanded Disability Status Scale to track disability progression.

This article will cover the basics of the EDSS, including:

  • How doctors use EDSS scores
  • How effective the scale is in predicting disease course and clinical outcome
  • How the scale can help determine which treatments may or may not work
  • How the results of the EDSS can affect a person’s treatment

What Is the Expanded Disability Status Scale?

The EDSS offers a way to measure how much your MS affects you now. It was developed in the 1980s from a dataset of several hundred people with MS. A person’s disease progression is tracked with a score from 0 to 10. A score of 0 means a person has no disability, and a score of 10 indicates death from MS. The higher the score, the more negatively a person is affected by MS. Points are assigned by your doctor after they examine you and ask about how MS has been affecting your life since your previous visit.

The EDSS is largely used for research and clinical trials to track how certain treatments affect disability progression in MS. However, it is also used as a clinical tool to see whether or not people living with MS are improving over time. Additionally, the EDSS can be used as one of many predictors of how well you might do going forward.

Functions Tested

MS can affect any part of your central nervous system (CNS) — your brain and spinal cord — both of which control a wide range of functions. Thus, to calculate your EDSS score, your neurologist will look at various functional systems to see how they have been impacted by MS, if at all. These functions include:

  • Muscle strength (your ability to move your arms and legs)
  • Balance, coordination, and tremors
  • Eyesight and eye movements
  • Speech and swallowing
  • Unusual sensations or numbness
  • Bowel and bladder function
  • Cognitive function (e.g., thinking and memory)

The Scale

The scale progresses in half-point increments from 0 through 10 (0, 0.5, 1.0, 1.5, etc.). Here is a summary of what some of the ranges and individual numbers roughly mean:

  • 0 — The examination shows function is completely normal.
  • 0.5 to 1.5 — A person in this range can walk around without any restriction, which means, for example, they could be a marathon runner. There may be small indications of issues with one or more functional systems.
  • 2.0 to 3.5 — A person in this range is determined to have up to four mild functional-system disabilities or one moderate disability. They are still able to walk without issues.
  • 4.0 to 4.5 — This score indicates a significant disability, though the person may still be active throughout the day and able to work. They can walk 300 meters or 500 meters without aid, depending on their score.
  • 5.0 to 5.5 — A person in this range is limited in their ability to perform full daily activities. They can walk up to 100 meters or 200 meters without assistance, depending on the specific score.
  • 6.0 — A person with this score is able to walk about 100 meters with a single assistive device (e.g., a cane or crutch), with or without needing to rest.
  • 6.5 — At this score, a person could walk 20 meters using two assistive devices, without needing to rest.
  • 7.0 to 8.0 — A person in this range is mostly or fully restricted to a wheelchair, may need assistance standing and sitting, and can walk no more than a few meters. They still have arm functionality.
  • 8.5 to 9.5 — In this range, a person is bedridden. Higher scores indicate loss of the ability to move one’s arm, communicate, eat, or swallow.
  • 10.0 — A score of 10.0 indicates a person has died due to MS.

Shortcomings of the EDSS

The EDSS is not a perfect measure of the impact of MS for three main reasons.

The EDSS Focuses Primarily on Walking

Most of the EDSS centers around mobility. However, living with MS involves much more than just your ability to stand, walk, and run. There are invisible symptoms that are no less a reality for people affected by MS, including:

These limitations are addressed in newer scales. Among them is the Multiple Sclerosis Functional Composite, which tries to include metrics of symptoms in a more balanced way.

The EDSS scale also ignores brain and body scans, another marker of disability. For example, radiologists track certain lesions in the brain and whether or not those lesions are “gadolinium-enhancing” — meaning they light up on scans when exposed to gadolinium-based contrast. This is used as a marker for MS activity and disease duration.

Learn more about MS Flare-Ups and Managing Relapses.

EDSS Does Not Diagnose MS

The EDSS is not a way to diagnose MS. There are other criteria (called the McDonald criteria) that neurologists use to make this diagnosis. These criteria include symptoms as well as findings on scans such as MRI.

EDSS Is Not a Linear Scale

The scale is not linear. This means, for example, that a score increase from 1.0 to 1.5 does not reflect the same amount of change in disease progression as a score increase from 8.0 to 8.5. An increase from 1.0 to 1.5 indicates very minor changes, whereas moving from 8.0 to 8.5 can indicate a significant change — that a person has gone from being able to use a wheelchair throughout the day to being essentially bedridden. This can be a point of confusion for many people — even in MS and neuroscience research, where changes in EDSS scores are often measured as raw numbers.

Importance of the EDSS

Given the aforementioned shortcomings, you may wonder why the EDSS and similar scales are even necessary. Can’t the doctor just ask about and write down a person’s symptoms to track the progression of their condition?

Doctors rely on a medical history and what they find through physical exams to assess disease activity. However, many of these findings can be very subjective, as much is based on the doctor’s personal interpretation. One doctor might think a person has a rating of 3 out of 5 in arm strength, while another may think the person’s arm strength should be rated 4 out of 5.

The EDSS and other scales try to solve this problem by turning this process into an objective one with consistent scores. By assigning numbers and clearly defining what each number means in a standard rubric, the EDSS tries to decrease bias between different raters. The result, though imperfect, has value.

Take the quiz: Is My MS Progressing?

The EDSS and Treatment Options

How you score on the EDSS can help determine what kinds of treatments you may receive. The score can be predictive, in many cases, of how successful a treatment might be for a given case of MS.

Many disease-modifying therapies have not been available for people above or below a certain EDSS score cutoff, largely because many clinical trials and study groups will only include people in a certain score range in their testing.

What You Can Do

Follow up with your doctor and other medical professionals regularly as scheduled, and let them know exactly how MS affects you. Tell them how you were at your baseline (when you were first diagnosed) compared to how you are now.

The EDSS and other scales are not perfect tools, and they often focus on only certain parts of the MS experience. That’s why it is important to tell your doctor about both the visible and invisible parts of your own experience.

Talk With Others Who Understand

MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, more than 170,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.

Do you have questions about the EDSS or what it means? Share your experience in the comments below, or start a conversation by posting on MyMSTeam.

References
  1. Kurtzke Expanded Disability Status Scale (EDSS) — National Multiple Sclerosis Society
  2. On the Origin of EDSS — Multiple Sclerosis and Related Disorders
  3. Efficacy of Three Neuroprotective Drugs in Secondary Progressive Multiple Sclerosis (MS-Smart): A Phase 2b, Multiarm, Double-Blind, Randomised Placebo-Controlled Trial — The Lancet
  4. Predicting Clinical Progression in Multiple Sclerosis After 6 and 12 years — European Journal of Neurology
  5. Expanded Disability Status Scale (EDSS) — Multiple Sclerosis Society
  6. Outcome Measures in Relapsing-Remitting Multiple Sclerosis: Capturing Disability and Disease Progression in Clinical Trials — Multiple Sclerosis International
  7. Systematic Literature Review and Validity Evaluation of the Expanded Disability Status Scale (EDSS) and the Multiple Sclerosis Functional Composite (MSFC) in Patients With Multiple Sclerosis — BMC Neurology
  8. Predictive Value of Gadolinium-Enhanced Magnetic Resonance Imaging for Relapse Rate and Changes in Disability or Impairment in Multiple Sclerosis: A Meta-Analysis. Gadolinium MRI Meta-Analysis Group — The Lancet
  9. Expanded Disability Status Scale Progression Assessment Heterogeneity in Multiple Sclerosis According to Geographical Areas — Annals of Neurology
  10. Assessment of Racial/Ethnic Disparities in Volumetric MRI Correlates of Clinical Disability in Multiple Sclerosis: A Preliminary Study — Journal of Neuroimaging
  11. McDonald Criteria — Multiple Sclerosis Trust
  12. Inter- and Intrarater Scoring Agreement Using Grades 1.0 to 3.5 of the Kurtzke Expanded Disability Status Scale (EDSS). Multiple Sclerosis Collaborative Research Group — Neurology
  13. Country, Sex, EDSS Change and Therapy Choice Independently Predict Treatment Discontinuation in Multiple Sclerosis and Clinically Isolated Syndrome — PLOS One
  14. Factors Influencing Long-Term Outcomes in Relapsing–Remitting Multiple Sclerosis: PRISMS-15 — Journal of Neurology, Neurosurgery & Psychiatry
Evelyn O. Berman, M.D. is a neurology and pediatric specialist and treats disorders of the brain in children. Review provided by VeriMed Healthcare Network. Learn more about her here.
Ryan Chiu, M.D. obtained his medical degree from the University of Illinois College of Medicine in 2021. Learn more about him here.

A MyMSTeam Member said:

I walk with a walker and also use a scooter to go further like take my dog for a walk. Right now I have pain in neck arms. On a heating pad. Just lost my husband with cancer. Married 51 year's

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posted 14 days ago

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