Did any of you know your EDSS score at diagnosis?

[aspen2]

I spent significant time in limbo where my main concern was, by the time I was diagnosed, I would have permanent issues.  Unfortunately, that has happened, and on my diagnostic report it was said I had an EDSS of 3.5.  At time of dx I was not in a relapse -- this is my "normal".  My neuro's note said, in support of diagnosis, that I now have a disability.  Ugh.

I'm just curious  how others have fared EDSS-wise at diagnosis.  I hear of those with quick dxes who don't really have lingering issues -- in my first 18 months , I returned to normal.  So I wonder if anyone ever gets diagnosed with a low EDSS, just because their mris and LPs etc. made the dx quicker.  Contrarily, some are hit really hard with relapses that require rehabilitation.

What did your EDSS look like, if you are willing to share?

[kwarendorf]

I have no idea what my EDSS is.

[ConfirmedRachel]

Mine is 2 based completely on cognitive issues. I think over 5 looks at the ability to walk aided/unaided etc mainly doesn't it?

[aspen2]

I believe you are correct, Rachel.  My issues right now are cognitive and motor, but I am walking without aid .. well, except for the DAO I am getting shortly in hopes it will help with foot drop.

[immisceo]

That's a good point. To be on the study, I had to go through a screening process from the pharmaceutical company. But once I qualified, both the government (in the form of our health service) and the insurance company's nose was out of my treatment business. I'm sure it would be different if my treatment was theoretically on their + my dime. I'm sure if it had a hand in what treatments were made available to me, I'd be paying a lot more attention to that number too. Thanks for the valuable perspective and reminder!

[Artanis12]

I've been dx'ed for a year and a half now, but I don't think I've ever been officially "scored", and I've not pored through my doctor's stuff to see if it's buried in there.  I just know I went pretty quickly - a matter of months after my first attack -  to feeling much more comfortable with a cane for any significant walking,  and my last 25 foot timed walk was 8 seconds, not so great. I feel like I pretty much have one speed, mostly SLOW. :-/

There is a fine calculation going on for me now, of how much I can and can't do. I turn down a LOT of things because of there being too much walking involved - I just can't do it anymore. My recent trip to Ireland was very difficult. I gritted my teeth and did it and had great fun, but it was pretty exhausting and I had to forego quite a few enticing things I would have done if not for MS.

[TLC1104]

Hi,
After my appointment January 2016 with consultant for results of second MRI and him ready to offer me the DMD's,  my edss was 6
I was diagnosed in Oct 2015 but this is the first time I've been aware of EDSS, and that was as a result of reading my letter and looking up what it was about.
T

[aspen2]

TLC, I wasn't told my EDSS -- however did get a copy of the report :).

[immisceo]

I was diagnosed CIS in November 2010, MS January 2011. I've had higher EDSS scores in the interim, but as those issues resolved, it's gone back down. I'm more interested in the feedback my body gives in the exam and the status of my MRIs. EDSS to me is just a number, and not a terribly informative one at that.

[aspen2]

Agreed .. is this an old school number?  Or is it still in general use?  I've read papers where they use the EDSS to determine whether or not a treatment is working.  I can understand the need to have a 'simple' value even though the disease itself is complex.

[immisceo]

I've had these appointments every few weeks for five years, so I'm pretty sure I know how it'll go already. It will also involve a urine sample, just because I'm a female of child-bearing age. (a positive result would mean expulsion from the study for potential safety reason)

These appointments usually take a couple of hours, unless there's an MRI as well. I had the MRI appointment in January (my 14th!), so this is a shorter visit. I let them know if there have been any AEs (adverse events) since they last saw me and if I've taken any con-meds (short for concomitant medications = anything I've taken outside of the study med, vitamins included). I have various bloods drawn for liver function tests, and a few other vials I've forgotten the purpose of! It's only the liver function tests I have to wait for before I know I'm approved to dose that day.

I'll do a lot of fun, child-like tests like the PASAT (paced auditory serial addition) and the Symbol Digit Modalities test (fill in the letters based on symbols). I also get my vision tested using a progressively less saturated multi-constrast Sloan Letter Chart.

I get a neurological test from the PI (principal investigator, not private investigator!) involving the usual heel-toe, finger to nose, push/pull, follow with your eyes business. Mostly honing in on my balance, proprioception, reflexes, and muscle spasticity.

I also get a second, similar test from a research fellow who does not know the results of my test from the other doctor. This is just to provide 'back-up'.

The first 144 weeks of the study, it was double blinded. Neither I nor they know if I was on the study drug or not. In that phase, we're all being fairly careful about making assumptions. No one knows. Of course, in a medical emergency, there would be a way for them to find out, but thankfully it never came to that.

I've been on the unblinded extension for 108 weeks now, so I can sit down with the PI and have my MRIs through the years pulled up on his computer and do a comparison. But the upshot it, I'm pleased. None of us know the path our health issues will take, but right now I'm at peace with the decisions I've made and how things are going.

[immisceo]

I think mine may have been a 1 because of eye issues (internuclear ophthalmoplegia). Mine is currently a 1, I think, due to bilateral Babinski's. To be honest though, I don't really pay attention to that score. Many neurologist think it's a bit outmoded due to its reliance on many mobility metrics. As understanding grows about MS and all of the things it can affect, placing such immense significance on mobility is seen as an inadequately nuanced measurement of progression.

When I go to my study appointment tomorrow, I'll have two neurological exams and the EDSS tests, but I'll also be given a lot of neuropsych tests which help determine fluctuations or degradations in "higher functions". I'll also be given various questionnaires and inventories aimed at pin-pointing any mood changes.

Basically, EDSS is a pretty blunt instrument to try and quantify a very crafty, nuanced condition. I think more in terms of "How am I doing?". The EDSS number is as relevant to me as a number on a scale. I'm more interested in how my clothes fit!

[suspiciouscombo]

Love that explanation. Will you please keep us updated on the status of your study appointment tomorrow? Curious what transpires.

[aspen2]

I think my EDSS would look worse if it took into account cognition :P.  Neuropsych evaluation hasn't been a part of any of my testing so far .. and I'm not sure I want to know.  My issues are mobility, amongst other things.

How long have you had ms, immesceo?  Great that you are only at 1!

[Corriel]

I didn't get an official EDSS score until about 8 months ago but my physiatrist hazarded a guess 2 months after my dx (and it is assumed that I hadn't had MS more than 6 months before the dx).

Oddly, my first neuro had put me at 1.5 from the beginning even although he never did the full exam. Two months after my dx my physiatrist stated that at the time of my worst symptoms (prior to dx) my EDSS was likely a 2.5-3.0.

My physiatrist did the full exam (2.5 years after dx) and it was 4.5. It is now 4.0 (thanks to a couple of medications).

I freaked about my 4.5 briefly but then realized that it doesn't seem to be a big deal (so I have been told) until you hit 6.0 on the scale.

For the record, my dx was speedy as it only took 6 months after the first symptom presented and according to my history I didn't have it longer than the 6 months prior to dx.

I know where I live the EDSS is pretty much only used to determine which meds you are allowed to take based on insurance plans.

C.

[suspiciouscombo]

Now that is what I find interesting case by case. That you did not have it longer than 6 months (possibly). This is why I'm curious to hear what my MS specialist will convey on the 15th of this month. My guess is he may voice an LP etc. If another MRI is brought up I will demand it be accomplished with a 3T regardless of him stating it is not necessary. I'm realizing as stated earlier by some that some are diagnosed quickly whereas others live in limbo in varying time frames. Good Grief!

[suspiciouscombo]

And with all that said, it just goes to prove the "unpredictability" and wide spectrum of issues regarding a MS diagnosis. Every case is unique whether in Limbo, Dx'ed, or suspicious early onset symptoms, it is no doubt beyond frustrating. I'm starting to wonder. Geez... what you've been through aspentoo hits me hard.