Thanks for the good info.
This makes me so angry! How dare they! It is so so bad.
Would anyone here walk up to someone and say, even in a clinical setting, I give your sense of humour a score of 3, or you sex appeal score is only 5, or even you're a thickie your IQ is 100, or you are 4' 6" arent you small, or isnt the colour of your skin very pale/dark how do you live with that? So why do we put up with being defined by this artificial and arbitrary measurement?
Next time a neuro gets on their superior high horse and says "You're a 6!" come back with but I have an empathy score of 1000, a personality score of 10,000 and a life experience score of 100,000!!
Dont be defined by MS! Dont be defined by EDSS!!!
I am what I am
I think the EDSS scale is a useful tool to determine how much I have slid during the course of this disease. And if I were a 1 or a 2 again, that would be wonderful.
It seems that a lot of neuros don't even put their patients through EDSS testing, possibly to avoid making their patients feel "labeled". I imagine some neuros also have the outlook that EDSS isn't essential because there's only so much that can be done and what is going to be is going to be so why document it?gwa wrote:Actually I have never been told by a neuro what my "score" was/is. It is simple to look at the chart and determine where I fit into the scale.
It's always seemed to me that, at best, EDSS testing is very subjective and therefore not terribly accurate. Clinical trials find EDSS a useful tool and due to the absence of other tools I guess I'd have to agree.
I mentioned earlier that in going through the process of entering the Tovaxin clinical trial my wife went through EDSS testing twice and I found the process enlightening. We thought her EDSS would be zero but like anything else there are "tricks of the trade" involved to expose disability and her EDSS was 3.5. Obviously since a "normal" person's disability is 0 we find any number over that an insult, but after watching the testing and looking at the chart I have to agree with that number.
In one sense I'd liked to have been able to continue thinking her disability was 0, but on the other hand I think it's important for my wife to have gotten that more realistic picture of reality.
EDSS is just a research tool. If you're going to try to use statistics to show that one treatment helps a patient more than some other treatment, then you need to be able to quantify how well the patients are doing. EDSS is one way to measure and infer treatment efficacy.JFH wrote:This makes me so angry! How dare they! It is so so bad.
In keeping with that, this link (from the NMSS) http://www.nationalmssociety.org/MUCS_FSS.asp explains and provides other links which go into more detail how, why and when it's beneficial to know EDSS and additional ways that it is determined.NHE wrote:EDSS is one way to measure and infer treatment efficacy.
My neuro. (and probably all neuros) didn't really remember who I was each six month visit until I got into the Tovaxin trial and am there more often. I don't think if you don't see your neuro. very much that they would be able to remember your specifics and this gives them a place to start when considering options.