Sudden Irreversible Disability - Rare?

[Quixotic1]

I have to admit I am annoyed by the Marshfield Clinic study showing that the chance of a person with MS having an episode with "sudden, irreversible disability" being a rare phenomenon.  Maybe it's because my first symptom was sudden, permanent leg weakness.

Maybe it's because the Marshfield Clinic also authored an article that said that 60% of people referred to their MS Clinic actually had a Psychiatric Disorder, usually Somatization.  They made the point that only a "rare" person with certain red flags would turn out to have MS.  These "red flags" included a history of depression or anxiety, age over 50, normal LP or MRI, not having a sensory level (as in Transverse Myelitis), and many more absurdities.  I can't find my copy but when I do I will anger you all with the insanity of it.

So, I am asking those of you with MS whether you have ever had the sudden onset of a disabling symptom that did not improve sufficiently that it was not longer disabling.  This could be weakness, paralysis, vertigo, visual, hearing, etc.  Is it really so rare?

Feel free to describe the disabling problem and the extent to which it did or did not improve.

Quix

[biowham]

Quix, the "red flag" article is unspeakably arrogant in tone. We've (by that I mean I and my MD colleagues) have never written a paper using that sort of tone. I re-read it and now recall that it was a review, one lacking any information about search terms or what sort of analysis, if any, they did, etc. It's a fairly useless compendium of background noise behind a main message of, "If it's not a clear MRI-based presentation, your patient is crazy." I take issue with many things in that paper, from the science to its tone, but one thing that *does* make me nuts is their use of "psychiatric disease" and "normal" as terms. What year is this--1959?

Bio

[Quixotic1]

Sho - I agree that my definition was a bit loose.  However, I used the word "disability" not symptom or "effect".  However, a disability is a loss of function.  Most loss of function is pretty devastating.  I can't think of a function that one could lose which would be minor.  And if, it was really minor, it wouldn't be a disability.  My hope was that people would vote on things that really altered their life.  Not a numb patch here or a sopt of pain there.   Even permanent loss of one, non-dominant hand coordination is a big thing, or mild double vision for which they had to wear prism glasses.


As always, Sho, you are the voice of reason, and I do tend to fly off the handle with ire when I see certain things.  However, with regard to the Marshfield article, I believe that most docs will remember the salient points rather than the meat of the study.  They will see the title which does not use the word "severe":

They will take note of the introduction:

" The fear of sudden irreversible disability should not influence therapeutic decisions for patients with multiple sclerosis, say researchers, because such attacks are very rare. And when they occur, they happen whether or not patients are treated with interferons."

And they are left with the parting words:

"Many questions remain, but in the meantime, investigators hope this new study will allay fears of sudden irreversible disability. Dr. Bejaoui and Dr. Rolak emphasize, "Such attacks are very rare."  

My first attack left me disabled with vertigo and my second attack left me with significant weakness and spasticity of my right leg.  These took me to an EDSS of 5.0 to 5.5.  I feel very disabled.

So, why the study?  I still think it could well be used to hoodwink people into accepting that they don't need a DMD.  Is it really reassuring to know that you won't "suddenly be irreversibly disabled" with the next relapse?  If you have another relapse we can "catch it" and start meds if there is a need to.  Completely avoiding the studies that document best effect of the DMDs when begun early.

Bio - as to why even have an agenda like this?  It beats me.  Maybe just to give me a fake conspiracy to rant (or tilt) against.  I agree that there seems no purpose behind these, but otherwise why these studies to show that most people with symptoms have a psychiatric basis for them and a study to show that people have nothing to fear from "the next relapse"?  That is the gist of the "no sudden, irreversible disability article."

I think it might be a pure ego thing.  They like to be quoted.  Or they may be truly concerned at the economics of medicine and this is how they have decided to attack it.  Or they may be true misogynists and this is an expression of it.  In the "Red Flag" article, you have to admit to a very arrogant stance.  The lack of true science behind it makes it even more so.

I fear that with the lack of understanding about MS, that a great number of docs, both primary and specialty, will always have in mind that 60% of people with neuro complaints are somaticizing and leave it at that.  Why go further with the people who look really well?

Quix

[biowham]

Quix, I remember reading that paper and sharing your horror, not only because of the unverifiable numbers they cited (follow-up? neuropsych evaluations? um...no)...but because they were so utterly dismissive without even engaging appropriately in the conduct of science. I can't understand how anyone gets away with this kind of shabby, off-hand study and calls it science. And how did this get by peer review? My only guess is that reviewers agree in their hearts that many of their patients are simply somaticizing, and so they didn't question these conclusions.

I'll believe these conclusions when someone does a clear longitudinal study with real neuropsych testing of all patients and multivariate analysis of the factors involved: hx or not of psychiatric disorder, progression, + MRI, +CSF, and ultimate diagnosis, including organic and psychiatric. Until they've done a study with significant follow up and real verifiable testing, what these people are pumping out is BS.

What I can't figure out is what their dog is in this hunt. Why cause this kind of damage, and why that agenda? What's the payoff for them?

Bio

[jensequitur]

I should say that when I'm in a flare, or having a pseudo-flare, I qualify as being disabled.  But right now I'm doing fine, and only have a little weakness in the right leg.  So is that a permanent disability?

[shoshin]

Well, I voted no as I have only had gradual creeping disability that has not improved much. In fact, I was told at first I didn't need a DMD because of this slowness of progression. Unfortunately, it hasn't turned out to be as slow as I would've liked, although perhaps the neuros would not agree.

I wonder if the focus of the poll is a little different from the article since the Marshfield people only addressed sudden *severe* irreversible disability, which probably should be defined a little more broadly than they did, but presumably not include every irreversible disability or problem. Having some irreversible effects would seem likely to be common in people with MS with sudden attacks. I think I read a natural history article recently that said that MS naturally fluctuates and even improves over a longer time than is taken into account in a lot of the clinical trials for DMDs (i.e., an increased EDSS over six months doesn't necessarily translate into an irreversible increase which is different from what I read somewhere else that claimed that the majority of damage sustained over six months is irreversible).

FWIW, the Accelerate Cure Project has this to say about the Marshfield study (http://www.acceleratedcure.org:8080/)"

"Although most relapses in MS resolve either partially or fully, and progression of disability tends to occur gradually over time, some people with MS as well as doctors are concerned about the risk of a very severe relapse that doesn't resolve. This concern can affect treatment decisions -- for instance, it could influence someone away from stopping treatment even if they have other reasons for discontinuing it. A pair of researchers at the Marshfield Clinic in Wisconsin decided to help quantify  the odds of having this type of severely disabling attack. They examined their clinic's database to count how many MS patients there had experienced a relapse that left them permanently disabled with an EDSS of 6.0 or greater.

"Out of 1,078 relapsing-remitting patients who had 2,587 recorded relapses, only seven had a relapse leaving them with an EDSS of 6 or more that did not improve with time. For two of these patients, this relapse was a first MS attack that left them partially paralyzed. The other five patients who had confirmed MS at the time of the relapse also had partially paralyzing attacks that left them unable to walk without assistance. Their EDSS scores prior to the attack ranged from 2.5 to 4.0. Two of these five had been on interferon beta at the time. The research team found no characteristics that set these seven patients apart from the other 1,071, such as disease duration or past relapse features.

"A couple of limitations of this study are that (1) due to the clinic's location, it didn't include many African-Americans, and (2) it assessed disability in terms of the EDSS scale, which is weighted toward walking ability. However, the results provide initial evidence that severe relapses resulting in permanent disability are quite rare. The fact that some of the patients left with disability were on treatment at the time suggests that concern about these types of relapses shouldn't dictate decisions about treatment."

sho

[PastorDan]

I finally voted on this one, though I wasn't sure I was voting in the right category.  I put myself as "might have MS, & have suffered sudden irreversible disability."  My degree of lingering difficulty is probably borderline with regard to my personal opinion of what constitutes a disability, but as I stated, it would interfere with some jobs I've had in the past.  If I'd had this problem during my months as a Wal-Mart greeter, or my time as a building inspector, I'd have fallen flat on my face.  Literally.  As for whether I have MS, I often feel as if I might as well flip a coin.  Who knows?