EDSS self assesment

CureOrBust · Post by **CureOrBust** » Mon Jul 03, 2006 3:08 am

I have never had my EDSS done by a professional. I have read various sites that provide a break down of how to come to an EDSS. Such as http://www.geocities.com/HotSprings/3468/edss-fs.html

But even this information lacks how to combine the scores to one. Anyone know how this should be done?

Or an explanation of what to do with "8. Other function"

JFH · Post by **JFH** » Tue Jul 04, 2006 8:09 am

Sorry COB I dont know but I'm going to take the opportunity of your post to have a mini-rant about EDSS

I dont want the measure of my condition to be determined by what I cant do!! Give me a measure please of all the things that Ok maybe I dont do so well but still can do, and of all the other things I didnt use to do but do now that I'm two years into MS. So, even if you want to focus on physical attributes, how about saying Kelly Holmes (2x Olympic champion runner) has a score of 2000. That might give my neuro a score say of 900 and me well maybe 750. (When it come to personality Kelly might still have 2000, I might have 1000 and my neuro 30

)

My point I suppose is a universal measure of *ability* is much preferable to a *selective* measure of disability. I think we should all boycott EDSS, just refuse to be measured and ask for an alternative (they exist) something more affirming.

batpere · Post by **batpere** » Tue Jul 04, 2006 8:38 am

JFH wrote:When it come to personality Kelly might still have 2000, I might have 1000 and my neuro 30

You must have the same neuro I do - or are many of them that way?

Shayk · Post by **Shayk** » Thu Jul 06, 2006 5:36 pm

COB, you asked:

But even this information lacks how to combine the scores to one. Anyone know how this should be done?

I don't know how it should be done but this link might help a little bit.

JFH--what are the affirming alternatives to the EDSS?

Batpere and JFH--maybe we all have the same neuro. Mine's come out with several classics. Even before I was diagnosed he told me: "The part of your brain that's gone won't be coming back".

I hope everyone's well.

Sharon

Post by **jimmylegs** » Thu Jul 06, 2006 6:50 pm

my neuro was condescending when i expressed wanting to understand what was happening to me - suggested that i would need years of medical school before i could possibly understand. as if i should just stop trying to learn about it right now. don't think he really MEANT that, but that was sure how it came across!!!

viper498 · Post by **viper498** » Fri Jul 07, 2006 5:02 am

I got a similar stance from my neuro, but after digging in to him a little bit it made me realize how little he really knew about MS. He is a front line neuro, and specializes in nothing. He probably has 5 years of experience out of Med School.

AND, does anyone really know what MS is?

LisaBee · Post by **LisaBee** » Fri Jul 07, 2006 2:21 pm

Well, I don't know if this is good or bad, it is sort of OT, but I noticed on the bottom of my neuro med charts they don't check the MS box even though they say "MS". They check the "demyelinating disease NOS (not otherwise specified)" box, which somehow seems better to me than having MS, although I can't explain why I feel that way. More mystery, maybe? It's longer and more exotic-sounding and doesn't conjure up quite the same degree of dread. So I now I tell other docs that is what I have instead of MS. They all laugh.

I haven't found a "demyelinating disease NOS" support group yet, and I've been offered MS meds, so here I am. For those of you out there unsure as to whether or not you actually have MS, I truly feel your anguish. I really don't know either.

I just call mine MS only because it's shorter, not because I'm sure.

Lisa

PS I'm not criticizing my neuro with this story. It is really a big mystery.

JFH · Post by **JFH** » Mon Jul 10, 2006 12:04 am

CoB

Follow this link http://www.msdecisions.org.uk/ and the Treatments>Rating Scales menu options for a good explanation of how the EDSS is calculated.

Sharon

Some time ago I found a good site that gave two alternatives to EDSS - but blowed if I can locate it again

The better of the two was a rating system adapted from one used to measure the recovery of cancer patients after treatment. I'll get it eventually and post back.

CureOrBust · Post by **CureOrBust** » Mon Jul 10, 2006 4:02 am

thats exactly what i was looking for. The bottom of the page tells me how to combine the various scored into one EDSS. Thanks.

Now the only worry is that i am pushing close to a 3.0

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