I’m sharing 11 years of my EDSS data from my CAMMs trial with you because I want you to see the fluctuations in scoring over the years, but that in actual fact it stayed pretty constant throughout the whole 11 years and still continues to do do.
The Expanded Disability Status Scale (EDSS) is a method of quantifying disability in multiple sclerosis and monitoring changes in the level of disability over time. It is widely used in clinical trials and in the assessment of people with MS.
EDSS steps 1.0 to 4.5 refer to people with MS who are able to walk without any aid and is based on measures of impairment in eight functional systems (FS):
pyramidal –
muscle weakness or difficulty moving limbs cerebellar –
ataxia, loss of balance, coordination or tremor brainstem –
problems with speech ,swallowing and nystagmus sensory –
numbness or loss of sensations
Bowel and bladder function
Visual functions –
problems with sight Cerebral functions –
problems with thinking and memory other
EDSS steps 5.0 to 9.5 are defined by the impairment to walking. The scale is sometimes criticized for its reliance on walking as the main measure of disability
Score Description
0 Normal neurological exam, no disability in any FS
1.0 No disability, minimal signs in one FS 1.5 No disability, minimal signs in more than one FS
2.0 Minimal disability in one FS
2.5 Mild disability in one FS or minimal disability in two FS