Hi Lisa:
I have had two different neurologists and neither have mentioned this scoring system or my rating. Perhaps it's because I don't have enough difficulty for it to make much difference. I'll bring it up next time I meet with my dr since your post has made me curious.
- Julie
Julie,
I was curious too and that's why I asked my doctor. I had been reading about clinical trials which got me thinking. (see other comments in this post for more on that)
I don't think that the score means all that much until you get into the 4.5 and above area. That's where the transition to secondary progressive begins to be considered.
Even though I have difficulties in one area or another, I really am still at the low end of the scale. Not at 0.0 but not permanently above 3.5.
Lisa
I agree with Mandy. My doc early on "graded" me and only time it comes up is when Soc Sec wants an update.
Diane,
We are actually in much agreement. I'll repost the answer I just gave Mandy on this subject. I think I've heard you say a similar thing as Bubbie does below:
I hadn't thought much about the EDSS until I began reading much more about clinical trials. They always specify the range of EDSS scores. I guess it was Bubbie's comment on the Campath post which got me thinking about this again.
"What concerns me about this and most clinical trials is the criteria:
EDSS score 0.0 to 3.0
I was included in that group a decade or more before my diagnosis. I would have given any clinical trial wonderful data!"
She's right. An EDSS score between 0.0 and 3.0 is not very much affected at all. These would be the best trial participants.
btw Diane. I really appreciate that you come over here to comment. Thanks.
I haven't the foggiest idea. The clinical trial I was in kept checking me, but never told me what they thought!
Lisa-- is there a place here where I can pose questions about MS? I have a few.
Hi Jen,
It was fun chatting at Joan's on Friday. See the comments above which I left for Mandy and Diane regarding clinical trials. That's kinda what got me thinking about EDSS in the first place.
Also, if you look on the right-hand sidebar on this page, you will see a purple box. In that box is a place to "Ask a Question" and a place to "Answer a Question." Feel free to ask or answer questions of the community members. Some folks even ask/answer without ever writing Shareposts. It's kind of a nice feature.
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My doctors have never paid much attention to the score. I learned about the DSS through my own online research.
Numbers can be intimidating, so I don't think about the DSS much. Maybe that's my way of putting my head in the sand... I tend to do the same with my age.
lol. age in the sand.
I hadn't thought much about the EDSS until I began reading much more about clinical trials. They always specify the range of EDSS scores. I guess it was Bubbie's comment on the Campath post which got me thinking about this again.
"What concerns me about this and most clinical trials is the criteria:
EDSS score 0.0 to 3.0
I was included in that group a decade or more before my diagnosis. I would have given any clinical trial wonderful data!"
She's right. An EDSS score between 0.0 and 3.0 is not very much affected at all. These would be the best trial participants.