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 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?
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.