Aa
Sudden Irreversible Disability - Rare?
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
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
bump
me on guys we get enough help from Quix
me on guys we get enough help from Quix
damn keyboard - that should read 'come on'
I'm hoping my disability is only temporary. I've been on LTD for about 14 months now.
I was dx'ed with MS 1 week ago. I'm counting on the Rebif and the gabepentin (something like that) to turn things around for me.
Mike
I was dx'ed with MS 1 week ago. I'm counting on the Rebif and the gabepentin (something like that) to turn things around for me.
Mike
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?
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
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
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?
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