Measuring Multiple Sclerosis Disability with EDSS Score
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- Опубліковано 4 жов 2024
- 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 actal 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 criticised 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
To watch Dr Brandon Beaber's video, seach EDDS MS and watch him there.
As always please get in touch if you have any questions via the comments section
Thanks Laura :-)
3.0 Moderate disability in one FS, or mild disability in three or four FS. No impairment to walking
3.5 Moderate disability in one FS and more than minimal disability in several others. No impairment to walking
4.0 Significant disability but self-sufficient and up and about some 12 hours a day. Able to walk without aid or rest for 500m
4.5 Significant disability but up and about much of the day, able to work a full day, may otherwise have some limitation of full activity or require minimal assistance. Able to walk without aid or rest for 300m
5.0 Disability severe enough to impair full daily activities and ability to work a full day without special provisions. Able to walk without aid or rest for 200m
5.5 Disability severe enough to preclude full daily activities. Able to walk without aid or rest for 100m
6.0 Requires a walking aid - cane, crutch, etc. - to walk about 100m with or without resting
6.5 Requires two walking aids - pair of canes, crutches, etc. - to walk about 20m without resting
7.0 Unable to walk beyond approximately 5m even with aid. Essentially restricted to wheelchair; though wheels self in standard wheelchair and transfers alone. Up and about in wheelchair some 12 hours a day
7.5 Unable to take more than a few steps. Restricted to wheelchair and may need aid in transfering. Can wheel self but cannot carry on in standard wheelchair for a full day and may require a motorised wheelchair
8.0 Essentially restricted to bed or chair or pushed in wheelchair. May be out of bed itself much of the day. Retains many self-care functions. Generally has effective use of arms
8.5 Essentially restricted to bed much of day. Has some effective use of arms retains some self-care functions
9.0 Confined to bed. Can still communicate and eat
9.5 Confined to bed and totally dependent. Unable to communicate effectively or eat/swallow
10.0 Death due to MS
If you want to check out Dr Beaber's / Dr Boster's videos on explaining the EDDS, find them on UA-cam by typing in 'EDDS MS Dr Brandon Beaber / Dr Aaron Boster. They are so informative and explain stuff so well.
As always any questions just ask me in the comments section.
🧡
Sharing 11 years of my EDSS assessment data from my time on the campath clinical trial. Talking through the fluctuations of the scoring and why I think my scores went up.
''Disability severe enough to impair full daily activities and ability to work a full day without special provisions" I certainly felt that way a lot of the time, however never scored that high on the EDDS. As important as these physical examinations are, it sometimes doesn't factor in other MS symptoms that play havoc with every day life.
This was so interesting; thanks so very much for sharing your progression chart! Hope you are doing well. 🌺
Thank you for sharing this information with everyone Laura, you certainly put a lot of time and effort onto your videos
This is such valuable information. Thank you 🙏
You're welcome and thank you. Hope you're well 🧡
Very interesting
Hi thank you for your information I been having to Mach trouble with my vision a lot a pain , double vision, I can’t see the light I use glasses but I’m losing my vision it’s so difficult at night I don’t drive.
So sorry to hear that for you. Sending you good wishes to recover 🙏
Hi Laura, thank you for your very informative videos. I have a question please...is it possible to be diagnosed with MS at age 60?
Hi Viv, you're welcome. Yes it is possible and what I've read is that the most common differences in the older age group are that sensory and motor symptoms are more frequently found, there are fewer relapses and faster progression of disability. The majority of people however are diagnosed between the ages of 30 and 50 but it is possible to get late-onset Multiple sclerosis.
@@lauraironstalksms Beginning to wonder if my diagnosis of fibromyalgia (9 years ago, aged 51) was actually correct 🤔 ... This last year has been a tough one, developed numbness in lower part of right leg, followed by pins and needles and burning sensation in same area...then the same sensations (minus numbness) began in my left leg...now both my arms from elbows to finger tips have constant pins and needles. It's when I look back over the past years, the stumbles, falls, blackouts, cognitive abilities, vertigo, to name but a few of my symptoms, all investigated, many 'ologists seen. Tested POTS positive years ago. I've had Pernicious Anaemia for 24 years, regular B12 injections...I just feel exhausted most of the time. Hmmm, it would certainly explain a lot!! I'm not one to self diagnose, but with the many changes I've experienced this last year, and new symptoms, that's what made me Google things. I put ALL my symptoms into a medical health checker and it came back with just 3 suggestions...B12 deficiency, Fibromyalgia and MS 😌 but for the numbness, I would just have assumed the Fibro was worsening.
Hi Viv, apologies for the delay in getting back to you, I didn't want to put a haphazard reply back and wanted to spend considered time replying. I have read up a little bit on the differences between fibromyalgia and MS and from what I read it suggested that "There’s no specific test that can be used to diagnose fibromyalgia. Instead, a doctor will make a diagnosis off a group of symptoms, one of which is widespread pain" I wondered how one can come to that conclusion and wondered also that if Fibromyalgia symptoms sometimes mimic those of MS, how come no-one ever carried out any MRI's on you or a Spinal tab etc?
My Grandad was diagnosed with MS when he was 65 years old, my family always knew that there was something wrong with him because he was showing signs of an MS hug, pain, fatigue, drop leg around the age of 52, but was diagnosed until a lot later on. I think back then there wasn't too much known about a lot of diseases. I'm sure you are exhausted with it all, I can imagine. Well I guess you can eliminate the B12 deficiency by taking more B12 (3-6 months is recommended to see results) is it possible to ask for an MRI scan at all? Or ask for a second opinion? I do sympathise with you, but the fact that you're looking for other answers sometimes opens new avenues that we may never have explored. I'm a great believer in never giving up on anything and that the answer is always out there.
Hello, thank you very much for the valuable video. I have some important questions regarding this topic. Can I communicate please on WhatsApp or Facebook??
Hey, I don't have FB.
But you can contact me via email which is darceigh@gmail.com
Hi, laura,My wife just got MS, by your experience, do you know what vit or food can make myelin become good?
Hello, I've done a separate video on vitamins and minerals that I find help my MS. I've also done a couple of food videos too. Hope they help 😊
Can u share form of edss ?
Hi, sorry unfortunately I can't send the form onto anyone.