Great video thank you. I do not understand why the hands force is not part of the indicators. If you lose force in your hands you can not do important things in your normal day.
Upper extremity function is greatly underrepresented by the EDSS. The 9 hole peg test does pretty well to capture this even though it doesn't exactly measure strength.
Love this idea! Just this morning I was speaking with someone regarding the EDSS leaving some of us MSers out of potential research projects. I hope this is incorporated I'm tired of being left out.
Thank you for this. I have noticed this in the last year. Overall based on the EDSS test I would be high functioning. I however have noticed subtle changes cognitively and also fine motor changes that I just couldn’t articulate. Thanks to your videos and Dr Booster I was able to ask to have the SMDT and the 9 peg hole test done. The 9 peg hole test I am not even in the ‘range’ but one standard deviation out. I find my neurologist here is more focuses on ‘major’ changes rather than the minor ones. It is frustrating at times because it feels like nobody is listening when I am saying I am noticing changes as they keep referring back to the EDSS score. Thank you for a very helpful video that makes me feel supported and educated. The work you do is very much appreciated!
I have mild cognitive impairment related to my MS- I find myself apologizing to my wife for things that I forget or miss place I have done the neuropsychological testing . I did memory therapy also it was a little bit of a help.. When you have mild cognitive impairment you learn to hide your disability by saying I’m sorry I have a headache I didn’t hear you or I had something else on my mind
I feel as though I’d have good cognitive fix, but poor walking, balance, and generalized strength. Thank you for all these great videos you provide. I’ve said it before I wish you were my doctor. You’re great!
Preach!! Thank you so much for this video Dr. Beaber! I have always been frustrated by the EDSS score as a way to judge MS patients. Most patients that are forced to leave work or are experiencing difficulties in day to day life are struggling with fatigue and cog fog; not the ability to walk. What can we do to convince are neurologists change to the functional test?
It's not so much the neurologists. The FDA has typically required the EDSS for clinical trials just because it is so well established and allows comparison to prior trials. There are some newer trials using composite outcomes such as the ASCEND trial (Tysabri v.s. placebo for SPMS), but the EDSS is often required along side the MSFC.
@@DrBrandonBeaber oh interesting! I didn’t realize it was more of an FDA issue. Thanks for the clarification. Any way that patients, doctors or MS organizations can influence change?
@@EvenSoItIsWell I honestly don't know. I would say my opinion is very common amongst MS neurologists. It will probably happen gradually with newer clinical trials focusing on composite outcomes. The appealing thing about EDSS is that it's a single number which everyone can understand. Composite outcomes don't deliver that.
I hope to share this with my neurologist who is a fairly new practitioner and has only a couple of MS patients. My cognitive problems may be my most troublesome on most days. My symptoms vary from day to day, too, so that's an issue in evaluating my level of change. Thanks for another wonderful video!
Why isn't fatigue measured as part of EDSS or MSFC, considering it's (the most common?) symptom of MS? I find this particularily mind-boggling because, as far as I know, it's also one of the primary reasons people impacted by MS end up unemployed?
I believe the fatigue shows itself as the patient takes the exams listed above, especially in recall of symbol and time to record proper info. Or in the 25 feet walk test, it conveys how steady limbs are or how much flexibility the brain has.
My MS nurses (NB, Canada) do the timed walking and peg test, but don't do the others (at least, last I was in there they were not). I was never informed of my EDSS score, because my original neuro from 13 years ago said it was garbage lol. :)
I fear that one day I will be on the scale on either the EDSS or the MSFC since I am diagnosed with RRMS and currently have no disabilities. Dr. B, you are so passionate about MS and spreading top notch information on it, so it makes me wonder what intrigued you into researching MS?
"I fear that one day I will be on the scale on either the EDSS...since I am diagnosed with RRMS and currently have no disabilities" Get hsct asap as it's progressive disease and dmt don't stop progression...read this...www.ncbi.nlm.nih.gov/pmc/articles/PMC5221476/
Great info, I was in a drug trial and had to do all of these. The math one was the worst 😂 even the people who took me to my appointment would try and get frustrated! My neurologist has a nurse practitioner now and she does the time walk and exam. My fine motor skills are very bad, just typing this is hard for me. Not sure if there is anything that I could do to improve it?
I have never been able to picture what a spoken number looks like, or easily recognize the value of a written number. I could never do either one of the the tests with numbers! And that's with a high I.Q. How would that be evaluated if I tried the number tests, I wonder.
Amazing video, thank you so much for all of the information! And I'm also wondering since I happen to be diagnosed with functional neurological disease that causes me to randomly start shaking for, I would estimate, less than 5 minutes (roughly 90 seconds) is it correlated with the functional information that you provided here?
MS is very challenging to just diagnose Patient complaints, MRI’s , lumbar puncture etc. and even that can lead to Lyme’s disease and other diagnoses. The tests are also too subjective. The “walk” can not be run, the SDMT cognition must be done sequentially and falls flat for those with ADHD and dyslexia. The scoring is curved towards the test and not the patient. The test administrator wields the authority to label a “1” or a “5” Just as with a diagnosis, these test call for a second and third opinion at different locations, different times of the day, by both old, young male and female testers #notafanoftests
![Death to EDSS! [Petition to Improve Multiple Sclerosis Research]](/img/n.gif)
Great video Dr Beaber. Can you make a video about how improve cognitive disability , please. Thank you
I'll make a note of this Fatima. Thanks
I agree with you regarding this change but we all know how slow we are to change for the better.
Ridiculously slow.
Great video thank you. I do not understand why the hands force is not part of the indicators. If you lose force in your hands you can not do important things in your normal day.
Upper extremity function is greatly underrepresented by the EDSS. The 9 hole peg test does pretty well to capture this even though it doesn't exactly measure strength.
Love this idea! Just this morning I was speaking with someone regarding the EDSS leaving some of us MSers out of potential research projects. I hope this is incorporated I'm tired of being left out.
Thank you for this. I have noticed this in the last year. Overall based on the EDSS test I would be high functioning. I however have noticed subtle changes cognitively and also fine motor changes that I just couldn’t articulate. Thanks to your videos and Dr Booster I was able to ask to have the SMDT and the 9 peg hole test done. The 9 peg hole test I am not even in the ‘range’ but one standard deviation out. I find my neurologist here is more focuses on ‘major’ changes rather than the minor ones. It is frustrating at times because it feels like nobody is listening when I am saying I am noticing changes as they keep referring back to the EDSS score. Thank you for a very helpful video that makes me feel supported and educated. The work you do is very much appreciated!
I'm glad it was helpful Carol. I think we will see more composite outcomes in clinical trials going forward.
Glad you did this
I have mild cognitive impairment related to my MS- I find myself apologizing to my wife for things that I forget or miss place I have done the neuropsychological testing .
I did memory therapy also it was a little bit of a help..
When you have mild cognitive impairment you learn to hide your disability by saying I’m sorry I have a headache I didn’t hear you or I had something else on my mind
I feel as though I’d have good cognitive fix, but poor walking, balance, and generalized strength. Thank you for all these great videos you provide. I’ve said it before I wish you were my doctor. You’re great!
Thanks :)
Preach!! Thank you so much for this video Dr. Beaber! I have always been frustrated by the EDSS score as a way to judge MS patients. Most patients that are forced to leave work or are experiencing difficulties in day to day life are struggling with fatigue and cog fog; not the ability to walk. What can we do to convince are neurologists change to the functional test?
It's not so much the neurologists. The FDA has typically required the EDSS for clinical trials just because it is so well established and allows comparison to prior trials. There are some newer trials using composite outcomes such as the ASCEND trial (Tysabri v.s. placebo for SPMS), but the EDSS is often required along side the MSFC.
@@DrBrandonBeaber oh interesting! I didn’t realize it was more of an FDA issue. Thanks for the clarification. Any way that patients, doctors or MS organizations can influence change?
@@EvenSoItIsWell I honestly don't know. I would say my opinion is very common amongst MS neurologists. It will probably happen gradually with newer clinical trials focusing on composite outcomes. The appealing thing about EDSS is that it's a single number which everyone can understand. Composite outcomes don't deliver that.
@@DrBrandonBeaber thanks Dr. B!
I hope to share this with my neurologist who is a fairly new practitioner and has only a couple of MS patients. My cognitive problems may be my most troublesome on most days. My symptoms vary from day to day, too, so that's an issue in evaluating my level of change. Thanks for another wonderful video!
:)
Why isn't fatigue measured as part of EDSS or MSFC, considering it's (the most common?) symptom of MS? I find this particularily mind-boggling because, as far as I know, it's also one of the primary reasons people impacted by MS end up unemployed?
I believe the fatigue shows itself as the patient takes the exams listed above, especially in recall of symbol and time to record proper info. Or in the 25 feet walk test, it conveys how steady limbs are or how much flexibility the brain has.
My MS nurses (NB, Canada) do the timed walking and peg test, but don't do the others (at least, last I was in there they were not). I was never informed of my EDSS score, because my original neuro from 13 years ago said it was garbage lol. :)
I fear that one day I will be on the scale on either the EDSS or the MSFC since I am diagnosed with RRMS and currently have no disabilities.
Dr. B, you are so passionate about MS and spreading top notch information on it, so it makes me wonder what intrigued you into researching MS?
"I fear that one day I will be on the scale on either the EDSS...since I am diagnosed with RRMS and currently have no disabilities" Get hsct asap as it's progressive disease and dmt don't stop progression...read this...www.ncbi.nlm.nih.gov/pmc/articles/PMC5221476/
I bought the 9 peg test a number of years ago, and have done the timed walk for myself. How do we get access to the other tests?
I feel like I would have good cognitive, but compromised walking, balance, and general strength.
Great info, I was in a drug trial and had to do all of these. The math one was the worst 😂 even the people who took me to my appointment would try and get frustrated! My neurologist has a nurse practitioner now and she does the time walk and exam. My fine motor skills are very bad, just typing this is hard for me. Not sure if there is anything that I could do to improve it?
I have never been able to picture what a spoken number looks like, or easily recognize the value of a written number. I could never do either one of the the tests with numbers! And that's with a high I.Q. How would that be evaluated if I tried the number tests, I wonder.
Amazing video, thank you so much for all of the information!
And I'm also wondering since I happen to be diagnosed with functional neurological disease that causes me to randomly start shaking for, I would estimate, less than 5 minutes (roughly 90 seconds) is it correlated with the functional information that you provided here?
Functional neurological disease is a separate entity. I'm not aware of any established disability scale for functional neurological disorders.
MS is very challenging to just diagnose Patient complaints, MRI’s , lumbar puncture etc. and even that can lead to Lyme’s disease and other diagnoses. The tests are also too subjective. The “walk” can not be
run, the SDMT cognition must be done sequentially and falls flat for those with ADHD and dyslexia. The scoring is curved towards the test and not the patient. The test administrator wields the authority to label a “1” or a “5” Just as with a diagnosis, these test call for a second and third opinion at different locations, different times of the day, by both old, young male and female testers #notafanoftests
Seems like you’re talking too rapidly for me to absorb.
Thanks for the feedback Carolyn. I figured a lot of people don't like to watch long videos on TH-cam.
I backed the video up to understand what he was talking about early on.
You can adjust video speed. Click on the video, gear, playback speed and slow to a decimal less than 1.