Making Sense of MS Disability Scales

MS Disability Scales: How to Make Sense of Them

 Each visit with my MS Specialist, I am required to complete a questionnaire of how I am doing with my overall health.

This article first appeared on Healthline Contributors on 10/28/13.

Each visit with my MS Specialist, I am required to complete a questionnaire of how I am doing with my overall health.  This is important, as we know that symptoms of MS vary.  It starts with my head: listing all the symptoms that most of us experience at one time or another and works its way down to my feet. I have always understood that it helps to refresh my memory of things to mention of significance when my physician enters the room, but it is also an essential piece of information when put together with my exam to come up with my EDSS score.

MS Disability Scales: How to Make Sense of Them

The EDSS, (Expanded Disability Status Scale), is a tool used to assess whether your MS is improving, staying the same, or progressing. It was developed by man named Kurtzke back in the 1950’s and refined in the 1980’s and is used globally in the assessment of MS. It is the most used tool for this cause but it is not without its faults, even that it could be subjective with interpretation by whomever is performing the scale. Some feel it focuses too much on lower extremities than the overall disability. Learn more about this here.

EDSS ranks patients with a scale from 0-10 which includes half increments for greater specificity.  This scale is usually performed once sometimes twice a year and is a tool used along with your MRI to evaluate how treatments are working. Here is a list of how the scale is calculated:

0 =           Normal

1-1.5 =     No disability but some abnormal neurological signs

2-2.5 =    Minimal disability

3-4.5 =    Moderate disability affecting daily activities; needing cane

5-8 =       Increased severity with impairment; needing a walker or wheel chair

8.5 – 9.5 Severely disabled requiring bed rest

10 =         Death

Another scale that is used a little more frequently is known as the FSS, (Function System Score). This measures how your central nervous systems are working. It provides scores from 0-6. Everything evaluated in this list includes:

  •             Gait and the use of assisted devices
  •             Weakness/ trouble moving limbs
  •             Tremors and loss of coordination
  •             Speech, swallowing, and involuntary eye movement
  •             Numbness or loss of sensation
  •             Bowel and bladder function
  •             Mental function

The DS, (Disease Steps), measures MS progression by establishing a scale of 0-6 of how you walk at a distance of 25 feet. It also takes in account of physical and neurological evaluations.

One last scale is the MSFC, (Multiple Sclerosis Functional Composite). It is a newer measurement that highlights changes in mobility and is used mostly in clinical trials. This includes all the things mentioned in the previous scales going more in depth in each category, but also encompasses pain, fatigue, and energy levels. It also contains a functional test, which is the hand dexterity performance activity and a cognitive function test. This is a test using a PASAT, also known as Paced Auditory Serial Addition Test.

You most likely have experienced one or more of these scales but either didn’t realize what the name of them are or what they are used for. I suggest speaking with your physician to see where you rank on your EDSS scale. Knowing your scale number from where you started and where you are now could provide you with a more focused picture of how your treatment is working or what you can change!

Trust me on this!  When you are in pain, scales don’t seem to matter.  But for the rest of the time, maybe knowing a bit more about these scales can help you focus your doctor on issues that you have your concern when living with MS.



MS Blogger and Multiple Sclerosis Activist shares her journey living with MS, tips for others living MS and her husband, Steve, offers his insight as a caregiver for MS.