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
I am not dx.
I lost a job in 2007 due to problems with cognitive functioning. I am aware of the decline and very concerned about the impact on my current job. My background is accounting/finance which requires a lot of attention to detail. I had a short term job preparing tax returns and made too many mistakes for a small firm to retain me.
The other debilitating symptoms I have involve the "unbearable lightness of being" sensation, as I like to call it, combined with blurred or double vision, that make driving either dangerous or impossible. I have a 45 minute commute to work and have missed or been late to work 6 times in the last 6 weeks. My sx are usually at their worst in the morning and lessen, but do not resolve, through the day.
Appointment with new neuro (specializing in demyelinating disease) this Tuesday and hopefull that I can finally find out what is going on with my body in a relatively short period of time.
I lost a job in 2007 due to problems with cognitive functioning. I am aware of the decline and very concerned about the impact on my current job. My background is accounting/finance which requires a lot of attention to detail. I had a short term job preparing tax returns and made too many mistakes for a small firm to retain me.
The other debilitating symptoms I have involve the "unbearable lightness of being" sensation, as I like to call it, combined with blurred or double vision, that make driving either dangerous or impossible. I have a 45 minute commute to work and have missed or been late to work 6 times in the last 6 weeks. My sx are usually at their worst in the morning and lessen, but do not resolve, through the day.
Appointment with new neuro (specializing in demyelinating disease) this Tuesday and hopefull that I can finally find out what is going on with my body in a relatively short period of time.
Hey Quix,
I wanted to belatedly reply to this thread and say that I didn’t mean to detract from your poll. I think we really are on the same page and your points are on target. It is misleading that the article doesn’t always qualify that they’re talking about super severe relapses and it is likely that the article will be misused for unjustified delays and denials of DMDs.
I just wasn’t sure you were really getting the answers to the poll that you wanted since it wasn’t clear that people were agreeing about what was meant by disability (although your definition makes sense to me) or irreversible. Although the authors of the original article gave a strictly defined, but narrow, definition of severe, I’m wondering if they gave a good definition of irreversible or sudden (although I’ve not seen the original article).
I’ve never even been close to 6 on the EDSS, but I would definitely say that MS has had a profoundly negative and apparently irreversible effect on my life. If there were a med that would’ve prevented those negative effects, heck yes, I would’ve wanted it even if it were expensive and inconvenient (the main drawbacks of the current DMDs as they are not known to be dangerous). It does seem disingenuous to say that just because delaying a DMD doesn’t have any effect on your chances of something that’s equivalent to being struck by lightening, it’s therefore rational to not try to prevent less extreme, but nevertheless life-altering, accumulation of disability.
Pastor Dan made a good point that the level and type of problems interfere with one’s life depend on circumstances. I am fortunate to have a lot of support and not too many demands in my life. I can still do my job, but there are tons of jobs, including Wal-Mart greeter, which would be impossible for me.
It isn’t clear to me that there is a definite agreed upon definition of how long something has to last in MS before it’s considered irreversible. I have the impression that clinical trials tend to use an increase in EDSS of .5 or 1 that is sustained for six months. Of course, that’s back to the EDSS and mobility again.
This article (http://www.bmj.com/cgi/pmidlookup?view=long&pmid=19955128) suggests that perhaps even using the EDSS, people with MS might see improvement after a longer period like a year:
"Over the two year period 1403 (38%) patients in the per protocol analysis set showed an improvement in EDSS scores, and for 591 patients (16%) this was confirmed either up to year two or at the next annual assessment. These proportions are in contrast with the assumption in the ScHARR model, based on the Ontario dataset, that improvements (especially sustained improvements) in annual scores are unlikely."
I’m not sure about the definition of sudden either. Does that mean you wake up one day blind out of the blue? Over a few days or weeks? In terms of a DMD decision, it would seem like you would need a much wider window. Once a relapse has started, how soon would starting a DMD affect anything if the DMDs don’t reverse damage that’s already happened and take six or so months to reach full effectiveness? So even leaving aside the evidence that DMDs work better if they’re started earlier, it’s not like if you realized you were getting worse, you could start taking a DMD and have it really kick in in a day or a week.
Although I don’t think anything that has happened to me falls under the umbrella of sudden, there was a period where I went from having some limitations and difficulties (like not being able to use stairs without holding on to the railing) to significant intrusions into my ability to carry on with my daily life as I had before. I’m not really sure to what extent this represented an actual quickening of progression or whether it was just some sort of tipping point. I tend to think of it like the tip iceberg emerging from the water. There was a period of maybe four or six weeks where this became increasingly obvious (although it continued to get worse for months after that), but by the time I realized what was happening, a DMD would’ve been too late. This was right around the time I started the FTY720 trial and I remember how utterly desperate I was for the trial to start in the hopes that it might slow down or even reverse what was happening to me. Unfortunately, that didn’t happen and I have never gone back to where I was before that downward slide.
I don’t really know what article’s underlying point is either, but I think there is a legitimate (albeit coldhearted and calculating) argument that the current DMDs are not effective enough to justify their high cost. In a sense, those kind of calculations are what is needed to bring health costs under control and there seem to be some MS neuros trying to make these calculations. In light of the difficulty in predicting the course of an individual and the greater effectiveness of the DMDs when started earlier, a lot of this talk seems misguided.
There is a lot of information out there about the effectiveness or not such great effects of the current DMDs, which just makes my head spin. I don’t really know who’s right. Most of the studies have been done by the drug companies who have a vested interest in a positive spin on the data. The only other research, particularly on the DMDs and progression, that I know about is being done by the British NICE as part of their Multiple Sclerosis Risk Sharing Scheme Monitoring Study. They have recently issued some preliminary results, which are ambiguous so far as I can tell. They are comparing the effect on the people currently being treated with data on untreated people with MS from a natural history study. That natural history study had some oddities in how they recorded progression, which is messing up the short-term results. The researchers think the impact of these oddities (they somehow didn’t allow people to get worse and then better) and the influence of short-term fluctuations will decrease over time. Then they will then be able to get more reliable results.
Anyway, I’ve gone off on a few tangents, but I think the basic point remains that this article is a red herring that is likely to be misinterpreted by many.
Quix: I do want to say that I appreciate all that you do on the forum to provide context and prevent people from being misled by so much misinformation that is ought there.
sho
I wanted to belatedly reply to this thread and say that I didn’t mean to detract from your poll. I think we really are on the same page and your points are on target. It is misleading that the article doesn’t always qualify that they’re talking about super severe relapses and it is likely that the article will be misused for unjustified delays and denials of DMDs.
I just wasn’t sure you were really getting the answers to the poll that you wanted since it wasn’t clear that people were agreeing about what was meant by disability (although your definition makes sense to me) or irreversible. Although the authors of the original article gave a strictly defined, but narrow, definition of severe, I’m wondering if they gave a good definition of irreversible or sudden (although I’ve not seen the original article).
I’ve never even been close to 6 on the EDSS, but I would definitely say that MS has had a profoundly negative and apparently irreversible effect on my life. If there were a med that would’ve prevented those negative effects, heck yes, I would’ve wanted it even if it were expensive and inconvenient (the main drawbacks of the current DMDs as they are not known to be dangerous). It does seem disingenuous to say that just because delaying a DMD doesn’t have any effect on your chances of something that’s equivalent to being struck by lightening, it’s therefore rational to not try to prevent less extreme, but nevertheless life-altering, accumulation of disability.
Pastor Dan made a good point that the level and type of problems interfere with one’s life depend on circumstances. I am fortunate to have a lot of support and not too many demands in my life. I can still do my job, but there are tons of jobs, including Wal-Mart greeter, which would be impossible for me.
It isn’t clear to me that there is a definite agreed upon definition of how long something has to last in MS before it’s considered irreversible. I have the impression that clinical trials tend to use an increase in EDSS of .5 or 1 that is sustained for six months. Of course, that’s back to the EDSS and mobility again.
This article (http://www.bmj.com/cgi/pmidlookup?view=long&pmid=19955128) suggests that perhaps even using the EDSS, people with MS might see improvement after a longer period like a year:
"Over the two year period 1403 (38%) patients in the per protocol analysis set showed an improvement in EDSS scores, and for 591 patients (16%) this was confirmed either up to year two or at the next annual assessment. These proportions are in contrast with the assumption in the ScHARR model, based on the Ontario dataset, that improvements (especially sustained improvements) in annual scores are unlikely."
I’m not sure about the definition of sudden either. Does that mean you wake up one day blind out of the blue? Over a few days or weeks? In terms of a DMD decision, it would seem like you would need a much wider window. Once a relapse has started, how soon would starting a DMD affect anything if the DMDs don’t reverse damage that’s already happened and take six or so months to reach full effectiveness? So even leaving aside the evidence that DMDs work better if they’re started earlier, it’s not like if you realized you were getting worse, you could start taking a DMD and have it really kick in in a day or a week.
Although I don’t think anything that has happened to me falls under the umbrella of sudden, there was a period where I went from having some limitations and difficulties (like not being able to use stairs without holding on to the railing) to significant intrusions into my ability to carry on with my daily life as I had before. I’m not really sure to what extent this represented an actual quickening of progression or whether it was just some sort of tipping point. I tend to think of it like the tip iceberg emerging from the water. There was a period of maybe four or six weeks where this became increasingly obvious (although it continued to get worse for months after that), but by the time I realized what was happening, a DMD would’ve been too late. This was right around the time I started the FTY720 trial and I remember how utterly desperate I was for the trial to start in the hopes that it might slow down or even reverse what was happening to me. Unfortunately, that didn’t happen and I have never gone back to where I was before that downward slide.
I don’t really know what article’s underlying point is either, but I think there is a legitimate (albeit coldhearted and calculating) argument that the current DMDs are not effective enough to justify their high cost. In a sense, those kind of calculations are what is needed to bring health costs under control and there seem to be some MS neuros trying to make these calculations. In light of the difficulty in predicting the course of an individual and the greater effectiveness of the DMDs when started earlier, a lot of this talk seems misguided.
There is a lot of information out there about the effectiveness or not such great effects of the current DMDs, which just makes my head spin. I don’t really know who’s right. Most of the studies have been done by the drug companies who have a vested interest in a positive spin on the data. The only other research, particularly on the DMDs and progression, that I know about is being done by the British NICE as part of their Multiple Sclerosis Risk Sharing Scheme Monitoring Study. They have recently issued some preliminary results, which are ambiguous so far as I can tell. They are comparing the effect on the people currently being treated with data on untreated people with MS from a natural history study. That natural history study had some oddities in how they recorded progression, which is messing up the short-term results. The researchers think the impact of these oddities (they somehow didn’t allow people to get worse and then better) and the influence of short-term fluctuations will decrease over time. Then they will then be able to get more reliable results.
Anyway, I’ve gone off on a few tangents, but I think the basic point remains that this article is a red herring that is likely to be misinterpreted by many.
Quix: I do want to say that I appreciate all that you do on the forum to provide context and prevent people from being misled by so much misinformation that is ought there.
sho
1. I have permanent weekness in legs...Can nopt walk for any lenghth of time
2. Lasting Cognitive issues backed up by testing (including speech issues)
3. Fatigue... This is an every day challange for me.
In fact, been taking notes. I have on an average.....
about (3) half way decent hours in a (24) hour period that I
can try and cram everything in to....After that, I am Tapped out!
4. Balance issues....everyday
5. Don't know if you want to count this one Quix.....now I have the dx
Autonomic Dysfunction that does have a terrible affect on me
along with the other sx. (It really *****)!
My Neuro did tell me that because it took such a while for someone to give a definite dx that these were deficites that I will always have and he is just in hopes that we can stop anymore.
Thanks for the Poll Quix.
~Tonya
Suzieqs: I also have an Autonomic Dysfunction. Putting the the two togather is very hard to work with. Hve you seen an Electro Physiologist yet?
~T
I now have permanent numbness in the arch of my feet, plus speech problems and seizures. Plus I am beginning to show signs of Postural Orthostatic Hypotension of unknown etiology, possibly another permanent disability.
Sorry, I hadn't read the entire thread when I responded.
I'm left wondering what chronic severe pain means in the EDSS? If I wasn't able to control my TN pain with medication (and some day it may not be controllable with medication, if the number of dosage increases I've needed in the past 14 months is any indication), I would not be able to function. I don't know what I'd do. But, I can still walk. I'm curious how something like this would show up, if at all, in this scale.
I know, doctors like to brush of sensory sx: "It's just sensory, after all, you can still move your limbs" but clearly these people have never had TN.
I'm left wondering what chronic severe pain means in the EDSS? If I wasn't able to control my TN pain with medication (and some day it may not be controllable with medication, if the number of dosage increases I've needed in the past 14 months is any indication), I would not be able to function. I don't know what I'd do. But, I can still walk. I'm curious how something like this would show up, if at all, in this scale.
I know, doctors like to brush of sensory sx: "It's just sensory, after all, you can still move your limbs" but clearly these people have never had TN.
>> Are you guys as angry as I am?
I came across that article a few months back and I was upset by it because I would be classified as a head case according to them. My neuro won't dx without a + MRI, but she knows my sx are real and not somatization.
I do feel like this type of thinking becomes a tautology: if you have a - LP or MRI and 6 months later you still do, then clearly it's somatization and not something neurological. If the great doctors at our clinic can't figure out what you have based on our overly specific criteria, then you must need psychiatric care...
Going back to your original question (I didn't answer the poll because I'm not dx), I have had TN for the past 14 months, I think it's permanent. After a few months it showed up on the other side, too. I am able to control it with an ever increasing dosage of medication (I take 300 mg of Lyrica a day), but when I max out or there are no other meds available to try, I can't imagine that I won't be disabled. I prefer not to think about that. :) I'm not disabled yet (just slow and tired).
I came across that article a few months back and I was upset by it because I would be classified as a head case according to them. My neuro won't dx without a + MRI, but she knows my sx are real and not somatization.
I do feel like this type of thinking becomes a tautology: if you have a - LP or MRI and 6 months later you still do, then clearly it's somatization and not something neurological. If the great doctors at our clinic can't figure out what you have based on our overly specific criteria, then you must need psychiatric care...
Going back to your original question (I didn't answer the poll because I'm not dx), I have had TN for the past 14 months, I think it's permanent. After a few months it showed up on the other side, too. I am able to control it with an ever increasing dosage of medication (I take 300 mg of Lyrica a day), but when I max out or there are no other meds available to try, I can't imagine that I won't be disabled. I prefer not to think about that. :) I'm not disabled yet (just slow and tired).
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