EDSS Scores

[smalltowngirl]

I’m wondering about EDSS scores. Do they change? Or is it more like, once you’re given a score, they only change it if you get worse and the score increases?

I was scored 2.5, but I have slightly less numbness than I did at that visit. Because I can feel my leg a bit more, I’m not dragging it as much. I figure my score will probably change, but wasn’t sure how that worked.

[pennstater]

Can't really help. My neuro(s) were not big believers in the EDSS score since if fully ambulatory, didn't really capture disability. For me, agree. Legs are good, but arms, cognition, dizziness, and fatigue are issues.

My last neuro had to assign one for my disability carrier, but then made sure to document all not captured in the score.

[rdmc]

My neuro doesn't seem too concerned with EDSS. I have never known what mine was. I can guess, looking at the scale, what I believe mine to be, but I've never had a neuro volunteer, or even mention it, on the other hand, I've never asked. (one neuro I had did the timed walk each visit, and I wondered if it had to do with EDSS, but I don't think it did.)

Seems to me that RRMS can be so volatile as far as symptoms from month to month, sometimes week to week, or often day to day (EDSS deals mostly with walking
skills) that during a "good period" one might be able to walk farther than during a flare. So like the image of the lesions in the fellow who had 26 MRIs in a year, everything was constantly in flux. I'd
think an EDSS score would have a lot to do on what "season" your MS happened to be in.

[pb909]

From my initial PPMS dx 10 years ago when I was just starting the continuous slow weakening until now being in a w/c, my neuro has never mentioned nor done an EDSS score on me.

[Tawanda]

Chiming in...my neuro also keeps my score a "secret" and I don't ask. Without "cog fog" or fatigue factoring in, I think the tests just give us something to do during my appointment. I hate standing still with my eyes closed. I feel so ridiculous and self-conscious! Last appointment I did the tree yoga pose (in my shoes which is a total cheat) and asked if we could just skip this stuff in my case. I already skip MRIs now.