Self-assessed EDSS score

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Self-assessed EDSS score

Postby CureIous » Thu Nov 12, 2009 9:31 pm

Need a how-to guide on this one. Don't know if my neuro ever did that for me, had all the usual studies/tests etc including the EVP which confirmed delayed response on my right side optic nerve, which matched my original presentation of sudden onset diplopia (eye turned inward). I'd like to fill out the patients log deal but neuro has never communicated much of anything other than when my next appt is, and how soon am I planning on starting back on the shots, they never fail on those measures. Point being I cannot answer some of the questions so I'm not answering any of them, what's the point? It would just be my say so on most of it anyways. Very frustrating to deal with having half a disease. On one hand you have a diagnosis, on the other hand is the expression of the disease.

What to do with MS-lite.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
User avatar
CureIous
Family Elder
 
Posts: 1200
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Advertisement

Postby CNClear » Thu Nov 12, 2009 9:49 pm

You can request a copy of your records from your neuro's office...I'm pretty sure that's how just about everybody knows all the intimate details of their particular dance with MS...

Just my personal experience, for what it's worth...

I had the same thing you describe as 'MS lite' for 23 years...then I started taking Copaxone (just because my neuro made me feel like I was not doing everything I possibly could do to help myself). Took it for 2 years and THAT was the beginning of my downhill slide...I felt terrible taking it and I got new symptoms, worse symptoms from which I never fully recovered...so I quit Copaxone and tried Avonex...I felt worse and got worse for 2 more years...if I had it to do over, I definitely would NOT take those drugs (or similiar ones) again...I wish I never had started them!

But, apparently, just like the disease, the treatment(s) react differently in everyone, but both suck... :cry:

Lisa aka, CNClear
dx 1983, almost 51
Scheduled with Dake Dec 8 & 9
User avatar
CNClear
Family Member
 
Posts: 96
Joined: Fri Aug 28, 2009 3:00 pm
Location: Near Atlanta, GA

Postby radeck » Thu Nov 12, 2009 9:55 pm

Hi Mark, there's a self-assessment guide linked from the tracking thread intro post. Let us know if you have any particular problems with assessing it from there.
radeck
Family Elder
 
Posts: 398
Joined: Mon Feb 16, 2009 4:00 pm

Postby CureIous » Thu Nov 12, 2009 11:09 pm

radeck wrote:Hi Mark, there's a self-assessment guide linked from the tracking thread intro post. Let us know if you have any particular problems with assessing it from there.


Hi Rad, I know I'm low, no question about that, but as was stated on here somewhere buried in the quicksand, EDSS has enough shortcomings in and of itself, I question it's usefulness at all for the majority of the newly diagnosed like myself, even though my onset was nearly 7 years ago. Guess I'll just dartboard the thing. It's my own need to be accurate I guess. Well aware that regardless of any assessment on my part, MS-lite symptoms are something that some would be happy to have "only". Course that does nothing to offset the affects on one's life, but never hurts to keep things in perspective to the big picture. Most of the big stuff has been transient anyways, it's that day to day stuff that you feel coming over you ever so slowly, conversations more laborious, the extra 20 seconds stuff bobs around inside your head before it finds a way out if you remember it that long lol. Depression. For no reason. All that jazz.

Anyways I give it another shot, know it's no big whoop just not something ever had to quantify before. :)
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
User avatar
CureIous
Family Elder
 
Posts: 1200
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Postby CureIous » Thu Nov 12, 2009 11:26 pm

CNClear wrote:You can request a copy of your records from your neuro's office...I'm pretty sure that's how just about everybody knows all the intimate details of their particular dance with MS...

Just my personal experience, for what it's worth...

I had the same thing you describe as 'MS lite' for 23 years...then I started taking Copaxone (just because my neuro made me feel like I was not doing everything I possibly could do to help myself). Took it for 2 years and THAT was the beginning of my downhill slide...I felt terrible taking it and I got new symptoms, worse symptoms from which I never fully recovered...so I quit Copaxone and tried Avonex...I felt worse and got worse for 2 more years...if I had it to do over, I definitely would NOT take those drugs (or similiar ones) again...I wish I never had started them!

But, apparently, just like the disease, the treatment(s) react differently in everyone, but both suck... :cry:

Lisa aka, CNClear
dx 1983, almost 51
Scheduled with Dake Dec 8 & 9


Sigh. 1983. What a year that was! We just moved here from Saratoga near San Jose. When the plane flew into LAX we couldn't even SEE LA for the smog. Yuck. I got an instant asthma attack when we got off the plane, before I even had asthma lol. Sorry you had such a bad experience with the drugs. I avoided them for a long time, "out of sight out of mind". But I knew it was creeping creeping creeping. Not denial really at all, more of a "aint broke don't fix it" procrastination, all scientific arguments aside. Anyways finally after enough flareups the time had come, and my insurance paid all except the stupid delivery fee and per diem so it was like 100 bucks a month, not too bad all things considered. Cept my insurance has a cap on that portion which fell under "home health care" so I would get like 2 years max then no mas. Decided the 1 a week shot was easier so started on Avonex, wifey the super-squeemish one admin'd the shots for me, what a trooper God bless her heart lol. We made a family affair out of it so the kids wouldn't get scared. Savannah would "prep" my arm with a wipe, Hailey would open the package for me, then I would do the needle part then Suzy gives the shot. Figure it's good for the kids too, to just put it all out there instead of being scary and mysterious. Thing is, couldn't get over the side affects, even after doing for months it just took me out for an entire day. Wonderful. So what happens when we work overtime then what? lol. Anyways mister non-compliant here has a months supply in the fridge you can have it, not even my neuros office would take it off my hands for free.

Well this is good to see you getting in after having this for so many years. I wonder why you progressed so rapidly after the shots. Gee, didn't see THAT in the literature ;). I can probably just call the girl at the neuro's office, she's super cool. I owe em a copy of my follow up MRI anyways. I'm the test-bunny for the office haha.

Sometime last year I decided I'd rather be invalid than take any more of that nasty stuff. So CCSVI came along in a timely fashion for me. SERIOUSLY.

:) Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
User avatar
CureIous
Family Elder
 
Posts: 1200
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Postby CureIous » Thu Nov 12, 2009 11:51 pm

Thnx everyone for the responses. Not trying to be difficult here or anything like that, I know I checked the tracking log out before but wanted to put some linear separation between the procedure and the coumadin to see where things settled out. My fatigue rating before procedure pegged right at 6.5555 , right at the average. Interesting. Never saw that before for some reason. I like the other scale too. Very well done. Will put it on my to-do list. Thanks for all the great work on that Radeck. I'll go back and read the instructions this time ;)

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
User avatar
CureIous
Family Elder
 
Posts: 1200
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Postby whyRwehere » Fri Nov 13, 2009 2:30 am

I decided to check out the EDSS rating for my husband on that Link. My husband's new neuro rated him a 4.5, which I consider extremely generous, I had rated him a 6. But looking back on the levels, the problem is walking vs working for him. He can work a full day (at a job, where he can sit down), but he can not really walk for beans. It just doesn't fit in, because they say at 5.5 you can't work a full day, but you are still mobile...
Which just goes to show, there is no real tracking or rating for this "disease".
User avatar
whyRwehere
Family Elder
 
Posts: 908
Joined: Mon Oct 03, 2005 3:00 pm

Postby cah » Fri Nov 13, 2009 4:44 am

It seems to me that at least some people here haven't discovered the "Edit"-Button yet. On every post of you, there's this button in the top right. So my suggestion would be that you partly fill it and ask about the things your're not sure about here, and then get back to the log and change it. Alternatively, you could copy the log form to here and discuss your entry before you put the "final" version in the tracking thread.

I'm really looking forward to your post... every single log confirms my belief.
"There is only one good, knowledge, and one evil, ignorance." Socrates
User avatar
cah
Family Elder
 
Posts: 336
Joined: Tue Oct 27, 2009 4:00 pm
Location: Germany

Postby whyRwehere » Fri Nov 13, 2009 4:52 am

But this isn't a log, it's a discussion about about self assessed EDSS, isn't it?
User avatar
whyRwehere
Family Elder
 
Posts: 908
Joined: Mon Oct 03, 2005 3:00 pm

Postby radeck » Fri Nov 13, 2009 8:02 am

I agree that as long as there is no disability, EDSS is inaccurate since you can have two symptoms or 5 symptoms but still be EDSS of 1.5.
Last edited by radeck on Fri Dec 18, 2009 10:40 pm, edited 1 time in total.
radeck
Family Elder
 
Posts: 398
Joined: Mon Feb 16, 2009 4:00 pm

Postby radeck » Fri Nov 13, 2009 8:13 am

I personally find the fatigue ratings not much more informative than the EDSS. Fatigue and ability to overcome it are VERY subjective. You can train yourself to some extent. For example if you've been an endurance sport athlete or somebody often under time pressure from work you've done that. If you're used to e.g. sleeping 2 hours/night for several days while trying to climb a 20k foot mountain you probably are less likely to have fatigue interfere with certain activities in every day city life. Same if you know how to survive on 4 hours/night for several weeks while writing a thesis or finishing some other project. Or one of many other possible examples or training fatigue management...

But at least the FSS and MSIS are doing well on quantifying the subjective, while the EDSS even fails at that.
radeck
Family Elder
 
Posts: 398
Joined: Mon Feb 16, 2009 4:00 pm

Postby CureIous » Fri Nov 13, 2009 10:11 am

radeck wrote:I personally find the fatigue ratings not much more informative than the EDSS. Fatigue and ability to overcome it are VERY subjective. You can train yourself to some extent. For example if you've been an endurance sport athlete or somebody often under time pressure from work you've done that. If you're used to e.g. sleeping 2 hours/night for several days while trying to climb a 20k foot mountain you probably are less likely to have fatigue interfere with certain activities in every day city life. Same if you know how to survive on 4 hours/night for several weeks while writing a thesis or finishing some other project. Or one of many other possible examples or training fatigue management...

But at least the FSS and MSIS are doing well on quantifying the subjective, while the EDSS even fails at that.


Gosh Rad, those two posts put it DOWN big time. Thanks for the help. Very well put. Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
User avatar
CureIous
Family Elder
 
Posts: 1200
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users