The Expanded Disability Status Scale (EDSS) is a key tool used by neurologists to measure how Multiple Sclerosis (MS) affects your body. Understanding the EDSS can help you gain insight into your condition and assist in making informed decisions about your treatment. In this article, I’ll simplify the EDSS, explaining how it assesses eight key functions, from reflexes and balance to vision and mental health. Whether you’re new to MS or have been managing it for years, this guide will help you navigate the EDSS and its role in your care. Keep reading to learn more.
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Table of Contents
Understanding the EDSS Assessment
The EDSS (Expanded Disability Status Scale) measures the impact of MS on different areas of your body. A neurologist or a team, like at the MS Center in Dresden, Germany, will check eight key functions and score each one on a scale from one to nine. Here, I’ll explain these areas and provide some examples of what is assessed.
1. Pyramidal System
- Reflexes in areas like your biceps, triceps, and knees.
- Strength in your limbs – for example, testing the shoulder muscles or finger movements.
- Ability to stand on one leg, walk on tiptoes, or on your heels.
- Joint mobility and checking for stiffness (spasticity) in arms or legs.
- Overall movement and coordination.
2. Cerebellar Function
- Balance issues, like walking with a wide and unstable gait (ataxia).
- Tremors, such as head shaking.
- The Romberg Test, which checks balance with your feet together and eyes closed.
3. Brainstem Function
- Eye movement issues (nystagmus) – where the eyes might shake.
- Facial pain (trigeminal neuralgia) – affecting different parts of the face.
- Swallowing difficulties (dysphagia).
4. Sensory Function
- Lhermitte’s sign – a feeling of electric shocks when bending your neck.
- Reduced vibration sense – using a tuning fork on joints to test sensation.
- Decreased sensitivity to touch or pressure.
5. Bowel and Bladder Function
- Issues with urination, like urgency or incontinence.
- Sexual dysfunction.
6. Visual Function
- Vision problems, such as blind spots or reduced sharpness that can’t be corrected with glasses.
7. Cerebral (Mental) Function
- Mood changes, like depression or unusual euphoria.
- Chronic fatigue.
8. Walking Ability
- The distance you can walk without needing to rest.
- Your walking speed and whether you need any aids like a cane.
EDSS Scoring
Each of these areas is scored from 1 to 9 based on how well you can function. These scores are combined to give your overall EDSS score, which can change over time. For example, during an MS relapse, your score might be higher, but it can improve once the symptoms ease.
The EDSS scale ranges from 0 to 10, in 0.5 increments. Here are some examples:
- 0.0 – Normal neurological exam (no disability).
- 1.5 – No disability, but minor issues in more than one area.
- 3.0 – Moderate disability in one area but still fully able to walk. One area grade 3, others 0 or 1 or slight disability in three or four areas (3 or 4 areas grade 2, others 0 or 1).
- 5.0 – Able to walk about 200 meters without rest or help, but daily activities are affected (e.g. working all day without special precautions). (One area grade 5, others 0 or 1; or combination of lower grades but exceeding level 4.0)
- 10.0 – Death due to MS.
Important Note
The EDSS was first used in 1983, at a time when there were few treatment options for MS. Today, thanks to advances in medicine, neurologists can slow or even halt the progression of the disease so that hardly anyone has to fear for their life because of MS. The focus now is on maintaining a high quality of life for as long as possible.
So please don’t be afraid. Be encouraged by the advances in medicine over the last few decades that benefit us all today. The future is bright as research continues to advance.
Nevertheless, the EDSS is inadequate as it does not capture Patient Reported Outcomes (PRO) and disproportionately weights walking ability. Yet cognitive abilities are often much more relevant in everyday life, both at work and in private life.
In-depth explanation of the EDSS
If you want to read more in-depth information, I recommend checking out the following pages:
See you soon and try to make the best out of your life,
Nele
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