Patients Multiple sclerosis
Topic of the discussion
Posted on 08/09/2016 15:51
The Kurtzke Expanded Disability Status Scale (EDSS) is a method of quantifying disability in multiple sclerosis. The scale was developed by John F. Kurtzke.
The EDSS quantifies disability in eight Functional Systems (FS) and allows neurologists to assign a Functional System Score (FSS) in each of these.
Kurtzke defines functional systems as follows:
- pyramidal (muscle weakness or difficult moving limbs)
- cerebellar (impaired coordination, loss of balance, tremor)
- brainstem (problems with speech, swallowing and nystagmus)
- sensory (numbness or loss of sensation)
- visual (problems with sight)
- bowel and bladder (incontinence)
- cerebral (problems with thinking and memory)
Once the test is taken, then the results can tell us according to the scale, the level of disability. The results in general are as follows: EDSS steps (results) 1.0 to 4.5 refer to people with MS who are fully ambulatory. EDSS steps 5.0 to 9.5 are defined by the impairment to ambulation.
Has anyone here taken this test? How was your experience taking it? Do you recomend it for others?
Thanks for sharing your info :)
Beginning of the discussion - 12/09/2016MS disability: Do you know your FS score? https://www.carenity.co.uk/forum/multiple-sclerosis/living-with-multiple-sclerosis/edss-test-1325
Posted on 12/09/2016 15:26
I have been given EDSS scores by my neurologist following our annual appointments. I've been seen by neurologists for the last 10 years but wasn't aware until this year that I would have one and what it was for. I asked my latest neuro about it and yes I'd been given one for all this time. Mine have been based on each appointment's clinical assessment and my feedback rather than a clearly defined test, your neuro has to put your EDSS on file so you can ask if they've not told you yours.
Posted on 30/12/2016 09:38
My EDSS is 6.5
It's based on a physical exam and discussion regarding your symptoms with your consultant. As Charlee said, they don't don't necessarily share it with you. You don't generally need it unless you are claiming benefits in which case it can be very useful.
Posted on 21/04/2021 17:25
I hope you're doing well. Have you seen this older discussion?
Have you heard of an EDSS score? Has your neurologist ever give you your score?
It is often said that the EDSS test focuses too much on walking, underestimates the importance of upper body function and completely ignores mood and mental health.
Do you feel like your score accurately represents how MS impacts your life?
@eddy23 @Bereke @kennie @boiyah66 @karen5 @elmcroft25 @Theawr @rubyrose69 @Bryan123 @MrsBBumble @Nealson @KarenTravers @Lee411 @lucy2000t2000 @Jackline @Lizgee @Lenny62 @liam361 @funkychicken2021
Feel free to share here!
Posted on 14/05/2021 12:07
Hello, mine is 6.5 and my neurologist always writes it in the letters he sends me after my six-monthly visits. He talked me through how he came to that number.
Posted on 02/11/2021 10:14
My bladder problems are becoming a problem. By the time I get to a toilet it's too late. I'm seeing a neurologist he went into my bbladder found red circles. I cant use the estrogen pills he gave me as I bleed and I'm very sore. Just taking antibiotics for now. Has anyone else any advise please
Posted on 16/11/2021 12:53
We'ar a pad accident less likely if you lesson the fear of wetting and do pelvic floor and box breathing.
Posted on 09/12/2021 18:15
Has anyone noticed I have started to gasp. In the night I seem to pause breathing. I've heard It could be sleep apnea. Although no cure it can be managed with medication. Has anyone else noticed taking an extra breath. It scares the hell out of me as I could stop breathing