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 started having weakness in one leg and Vertigo and fatigue that effected my job in 2006, this has not improved.. I'm Dx with SPMS, over 50.. took over 5 years to Dx. My leg weakness has not improved and I'm now using a Power Chair to get around for shopping as I cannot walk any distance.
wobbly
wobbly
I was fairly certain that I had MS a year and a half before diagnosis. If I had presented myself early on at Marshfield with my voiced opinion that I suspected MS, surely I would have been categorized as somatization. My symptoms were "vague" and very bizarre, but I could feel something was amiss in my central nervous system. To the untrained eye it could have appeared that I was in the midst of a psychiatric disorder. I was anxious because my body was telling me something was terribly wrong.
I had standing orders at an urgent care for repeat testing for a UTI that didn't exist. (neurogenic bladder) I had been scrambling from doctor to doctor with visual disturbances that no one could explain. (retrobulbular optic neuritis). I had the creepy crawly's and general carppy feeling. I felt like my eyes were on fire and was breathing out hot air like a dragon.
It would take many years of follow up for this Marshfield study to be correct.
I was clinically diagnosed on my first visit with a neurologist. My LP was negative with a couple of nonspecific lesions.
I voted that I never had a sudden event that did not improve.
I had standing orders at an urgent care for repeat testing for a UTI that didn't exist. (neurogenic bladder) I had been scrambling from doctor to doctor with visual disturbances that no one could explain. (retrobulbular optic neuritis). I had the creepy crawly's and general carppy feeling. I felt like my eyes were on fire and was breathing out hot air like a dragon.
It would take many years of follow up for this Marshfield study to be correct.
I was clinically diagnosed on my first visit with a neurologist. My LP was negative with a couple of nonspecific lesions.
I voted that I never had a sudden event that did not improve.
is the Marshfield Clinic related to the VA?
my "sudden, irreversible disability" i would say is the fatique, pain, sleep issues, and brain chemistry effects (depression, mood issues).
put in the "mental mood disorder(s)" if you want. the va labels me with that although they link it to "due to general medical condition".
my "sudden, irreversible disability" i would say is the fatique, pain, sleep issues, and brain chemistry effects (depression, mood issues).
put in the "mental mood disorder(s)" if you want. the va labels me with that although they link it to "due to general medical condition".
Sudden, irreversible stupidity seems to come out of neurology internships.
Golly, Q, what counts as "irreversible" in this? I've no idea what I have any more (MS, migraine, somatization, bad attitude, etc.), but I know my balance junk is still with me, 21 months in. There are ups & downs with brief periods of stability between, (no puns intended), but it's still here. Vision's been bugging me nearly as long.
I suppose the other question is, what counts as "disability"? I'm still plodding away at being a pastor (with or without adequate income between the church and the few sponsors I've mustered up), and I'm reasonably confident I could still do my last job (but probably not the three jobs before that).
Golly, Q, what counts as "irreversible" in this? I've no idea what I have any more (MS, migraine, somatization, bad attitude, etc.), but I know my balance junk is still with me, 21 months in. There are ups & downs with brief periods of stability between, (no puns intended), but it's still here. Vision's been bugging me nearly as long.
I suppose the other question is, what counts as "disability"? I'm still plodding away at being a pastor (with or without adequate income between the church and the few sponsors I've mustered up), and I'm reasonably confident I could still do my last job (but probably not the three jobs before that).
Quix, is this the article you were looking for? (Even if not, it's an interesting one.)
http://www.neurology.wisc.edu/publications/07_pubs/Neuro_2.pdf
(Rolak & Fleming 2007, "The Differential Diagnosis of Multiple Sclerosis")
(I didn't vote in the poll; I was an MS suspect--no longer am, I suppose, though they've never given me any other really plausible explanation for anything--although I did have a sudden irreversible hearing loss, but I think that was primarily or purely mechanical.)
http://www.neurology.wisc.edu/publications/07_pubs/Neuro_2.pdf
(Rolak & Fleming 2007, "The Differential Diagnosis of Multiple Sclerosis")
(I didn't vote in the poll; I was an MS suspect--no longer am, I suppose, though they've never given me any other really plausible explanation for anything--although I did have a sudden irreversible hearing loss, but I think that was primarily or purely mechanical.)
I'm the undiagnosed, but one of my first symptoms was left sided weakness/spasticity in my arm and then it soon went to my left leg. I couldn't do a thing with it. I kept dropping things. Then I was having trouble with my fingers wanting to clasp down, and my arm drew up. It was a fight to keep it straight. This weakness and spasticity has been present since it came on in 2007, the only difference is, at times is the severity of the symptoms.
Isn't it a known fact that MS can leave "sudden, irreversible disability"? So why are they putting out this kind of "jaded" study that reflects the opposite of what is already been studied.
MS is such an individual disease that some people might have "sudden, irreversible disability" right from the start, depending on their first few attacks, and others might take awhile longer to get there, but to me the evidence is plain that it can, and will lead to irreversible disability as everyone knows. To say that it is rare for this "sudden, irreversible disability" to occur, is bull$#!%.
Isn't it a known fact that MS can leave "sudden, irreversible disability"? So why are they putting out this kind of "jaded" study that reflects the opposite of what is already been studied.
MS is such an individual disease that some people might have "sudden, irreversible disability" right from the start, depending on their first few attacks, and others might take awhile longer to get there, but to me the evidence is plain that it can, and will lead to irreversible disability as everyone knows. To say that it is rare for this "sudden, irreversible disability" to occur, is bull$#!%.
My last flair in November was a 4 day onset of profound weakness. Walking and using my arms/hands was impossible over the week I had Solumedrol infusions. My arm strength (mostly right) has not returned to baseline, and I've had to stop performing. My legs are better, though. I keep hoping my arm strength will return.
20 years since first onset of total blindness in one eye due to ON.
The eyes recovered from ON but not totally legs are still a major issue, definite dx June last year - no DMD yet!
The eyes recovered from ON but not totally legs are still a major issue, definite dx June last year - no DMD yet!
yeh i am still fatigue is bad gets little better but no way i could hold a job.
plus all other issues they lol have wrinkels in their brain!!!
get em tick!!
plus all other issues they lol have wrinkels in their brain!!!
get em tick!!
I'm not dx with MS but have the sx. I gotten sudden sx that have lasted 10-11 months then disappear mostly or completely. but they'll return within 6 weeks on average.
lets take my right eye, it hasn't been the same since Jan '09. I lost my right side vision for about 45 minutes (some of the longest minutes in my life).
my right eye vision isn't clear lots of stuff moving or too dim/bright or blurry or double or jumpy vision or pain when I move my eye and/or on the backside of my eyeball, white flashing in Right eye only.
I either got a new black kitten or a big mouse in my house cause I see it in the corner of my right eye. I have 2 cats (Katie- 1/2 Egyptian Mau, 1/2 Siamese, age 15 years; Tiger- tortoiseshell age 21 years) and I know its not them.
my right forearm was mainly numb with itchy and/or electrical jolts (from time to time) I was so happy when it woke up normal; that lasted 6 weeks :(
Since I'm now heat intolerant all my ms-like sx are why worse. they may stick around after I cool down, but they usually go away. like my right leg when it decided to glued itself to the ground when I was over heated. it went back to normal the next day. I miss hot showers, they're just not worth the muscle spasms.
I'm not sure which one to mark
lets take my right eye, it hasn't been the same since Jan '09. I lost my right side vision for about 45 minutes (some of the longest minutes in my life).
my right eye vision isn't clear lots of stuff moving or too dim/bright or blurry or double or jumpy vision or pain when I move my eye and/or on the backside of my eyeball, white flashing in Right eye only.
I either got a new black kitten or a big mouse in my house cause I see it in the corner of my right eye. I have 2 cats (Katie- 1/2 Egyptian Mau, 1/2 Siamese, age 15 years; Tiger- tortoiseshell age 21 years) and I know its not them.
my right forearm was mainly numb with itchy and/or electrical jolts (from time to time) I was so happy when it woke up normal; that lasted 6 weeks :(
Since I'm now heat intolerant all my ms-like sx are why worse. they may stick around after I cool down, but they usually go away. like my right leg when it decided to glued itself to the ground when I was over heated. it went back to normal the next day. I miss hot showers, they're just not worth the muscle spasms.
I'm not sure which one to mark
I started developing weakness in my right leg about seven months after diagnosis, right around the holidays. One of my first symptoms was leg weakness, but it wasn't a big deal - I had so many other things going on.
It got to the point where I couldn't rely on that leg to remain straight - the knee kept bending unexpectedly. I pointed my toe out so the other muscles around the knee would be more 'in charge' and walked funny for a while.
Now things are a lot better. On good days it's weaker than my left leg, but I can still walk around and even run a little. On bad days, or when I do too much, the knee folds up. During a flare I really need something to hold on to, like a walking stick or the wall.
It got to the point where I couldn't rely on that leg to remain straight - the knee kept bending unexpectedly. I pointed my toe out so the other muscles around the knee would be more 'in charge' and walked funny for a while.
Now things are a lot better. On good days it's weaker than my left leg, but I can still walk around and even run a little. On bad days, or when I do too much, the knee folds up. During a flare I really need something to hold on to, like a walking stick or the wall.
If the disabling problem improved to the extent that it was not very disabling (even if it returned) it does not fit the definition of irreversible.
Folks, you know that many of our neuros have read this article in the last three years. The authors are not being intellectually honest when they claim that this is about the Differential Diagnosis of MS. Though it has huge tables listing every known disease that has ever caused an MRI lesion, and it spent about one page talking about a few of the more common things that should be considered, The REAL purpose of this article is to promote their opinion that the majority of people presenting to an MS clinic are somaticizing.
They justify this because, some years ago a study was done to find a series of criteria that would "make" the diagnosis of somatoform disorder. I saw that study once and was not convinced by it at all. Part of making this diagnosis was going back some months later to "verify" that that the person really didn't have some real neurological disease.
Well, let's talk about checking later - the follow up. So, 6 months later they check with the person. What are they going to ask about? Here are all the things I can think of and what the answers would be of a person with undiagnosed MS:
1) Do you still have the symptoms?
Answer: Yes
Conclusion : No change in the symptoms means it can't be MS, right? Because the symptoms always remit.
Answer: No
Conclusion: Well it must have been somatiform disorder and the stress went away. Right? There is no chance that a person with MS would have symptoms that appear and disaapear.
2) Do have a diagnosis now?
Answer: No
Conclusion: See there? You don't have a real disease, because if you did you would have a diagnosis by now. Of course, this would be ignoring the data that it takes about 2 years, on average, to be diagnosed.
Answer: Yes, I have MS
Conclusion: Ooops
********************************
The fact that someone followed up doesn't prove anything with a disease that is as variable as MS. The shrinks at the Marshfield Clinic have everyone in a Catch-22. Damned if you do and damned if you don't. I remain highly suspect of people who promote this kind of outrageous numbers, but it does explain why so many docs are willing to judge us as head cases.
This article is indeed the one that agered me 2 years ago. They state outright that having "any" of their red flags makes it highly unlikely that a person has MS. They even state that making the diagnosis depends on how typically the patient presents. I have no doubt that ALL the patients in their clinic have Classic MS. If it isn't Classic, in their minds, then it is likely Somatiform Disorder. This is the worst case of rigidity in thinking I have seen and it has been behind a great deal of my ranting.
I would like to see the follow up that they recommend for these people. Anyone want to bet it is nil? And their pronouncements become a self-fulfilling prophecy. I am also sure that no one dismissed by them returns there. I wouldn't. So they never see those unfortunate ones whom they missed with their black and white rules.
I had FIVE of their precious red flags. I had a normal MRI (by report), I had a history of major depression (a psychiatric illness), I was over 50, I had inexorable progression of my first symptom, by some standards I had a negative LP, and I didn't have any of the "Classic" symptoms. So what is "rare" times 5? There is NO way I can have MS according to them.
One of their flags is the steady progression of symptoms. Uhh, since no where in there article did they state that this was only about RRMS, I have to presume that they included PPMS in their discussion. Steady progression of symptoms is the hallmark of PPMS. About 15% of people with MS have PPMS. That is about 1 in 7. HELLO! 1 in 7 is NOT rare!!!!
Psychiatric illness is very common, if you include (and you must) the affective disorders of depression and anxiety. So, they are saying that only a "rare" person with depression or anxiety is going to get MS. The percentage of Americans who will have depression in their lives is something like 20%, isn't it? So, that group is excluded from getting MS? Really?
That isn't even considering the fact that depression and suicide are higher in the MS population than in almost any other. MS often causes depression. And we know that have a disabling, undiagnosed illness causes anxiety. How do we then reconcile the use of psychiatric disease as a red flag to exclude all but the "rare" individual? Are you guys as angry as I am?
The other part of the Marshfiled Clinic article that I find horrifying is their attempt to convince the neurologic world that MS really IS an MRI diagnosis. Their highlighted statement about most misdiagnoses of MS result from inaccurate readings of the MRI. As I have said before, I find this really a sad and very dangerous thing.
The folks at the Marshfield Clinic have an agenda and it appears to dovetail with their close neighbors the folks at the Mayo Clinc at Rochester.
There is a quite vocal group out there determined to 1) reduce the number of people being diagnosed with MS, 2) determined to reduce the number of people on a Disease Modifying Drug, 3) Determined to make MS a disease that is diagnosed by MRI, and 4) Determined to keep early determinations of Benign Disease a real diagnostic choice, thereby delaying (or avoiding) the use of DMDs.
Yes, This was a Soapbox thing.
Quix :((
Folks, you know that many of our neuros have read this article in the last three years. The authors are not being intellectually honest when they claim that this is about the Differential Diagnosis of MS. Though it has huge tables listing every known disease that has ever caused an MRI lesion, and it spent about one page talking about a few of the more common things that should be considered, The REAL purpose of this article is to promote their opinion that the majority of people presenting to an MS clinic are somaticizing.
They justify this because, some years ago a study was done to find a series of criteria that would "make" the diagnosis of somatoform disorder. I saw that study once and was not convinced by it at all. Part of making this diagnosis was going back some months later to "verify" that that the person really didn't have some real neurological disease.
Well, let's talk about checking later - the follow up. So, 6 months later they check with the person. What are they going to ask about? Here are all the things I can think of and what the answers would be of a person with undiagnosed MS:
1) Do you still have the symptoms?
Answer: Yes
Conclusion : No change in the symptoms means it can't be MS, right? Because the symptoms always remit.
Answer: No
Conclusion: Well it must have been somatiform disorder and the stress went away. Right? There is no chance that a person with MS would have symptoms that appear and disaapear.
2) Do have a diagnosis now?
Answer: No
Conclusion: See there? You don't have a real disease, because if you did you would have a diagnosis by now. Of course, this would be ignoring the data that it takes about 2 years, on average, to be diagnosed.
Answer: Yes, I have MS
Conclusion: Ooops
********************************
The fact that someone followed up doesn't prove anything with a disease that is as variable as MS. The shrinks at the Marshfield Clinic have everyone in a Catch-22. Damned if you do and damned if you don't. I remain highly suspect of people who promote this kind of outrageous numbers, but it does explain why so many docs are willing to judge us as head cases.
This article is indeed the one that agered me 2 years ago. They state outright that having "any" of their red flags makes it highly unlikely that a person has MS. They even state that making the diagnosis depends on how typically the patient presents. I have no doubt that ALL the patients in their clinic have Classic MS. If it isn't Classic, in their minds, then it is likely Somatiform Disorder. This is the worst case of rigidity in thinking I have seen and it has been behind a great deal of my ranting.
I would like to see the follow up that they recommend for these people. Anyone want to bet it is nil? And their pronouncements become a self-fulfilling prophecy. I am also sure that no one dismissed by them returns there. I wouldn't. So they never see those unfortunate ones whom they missed with their black and white rules.
I had FIVE of their precious red flags. I had a normal MRI (by report), I had a history of major depression (a psychiatric illness), I was over 50, I had inexorable progression of my first symptom, by some standards I had a negative LP, and I didn't have any of the "Classic" symptoms. So what is "rare" times 5? There is NO way I can have MS according to them.
One of their flags is the steady progression of symptoms. Uhh, since no where in there article did they state that this was only about RRMS, I have to presume that they included PPMS in their discussion. Steady progression of symptoms is the hallmark of PPMS. About 15% of people with MS have PPMS. That is about 1 in 7. HELLO! 1 in 7 is NOT rare!!!!
Psychiatric illness is very common, if you include (and you must) the affective disorders of depression and anxiety. So, they are saying that only a "rare" person with depression or anxiety is going to get MS. The percentage of Americans who will have depression in their lives is something like 20%, isn't it? So, that group is excluded from getting MS? Really?
That isn't even considering the fact that depression and suicide are higher in the MS population than in almost any other. MS often causes depression. And we know that have a disabling, undiagnosed illness causes anxiety. How do we then reconcile the use of psychiatric disease as a red flag to exclude all but the "rare" individual? Are you guys as angry as I am?
The other part of the Marshfiled Clinic article that I find horrifying is their attempt to convince the neurologic world that MS really IS an MRI diagnosis. Their highlighted statement about most misdiagnoses of MS result from inaccurate readings of the MRI. As I have said before, I find this really a sad and very dangerous thing.
The folks at the Marshfield Clinic have an agenda and it appears to dovetail with their close neighbors the folks at the Mayo Clinc at Rochester.
There is a quite vocal group out there determined to 1) reduce the number of people being diagnosed with MS, 2) determined to reduce the number of people on a Disease Modifying Drug, 3) Determined to make MS a disease that is diagnosed by MRI, and 4) Determined to keep early determinations of Benign Disease a real diagnostic choice, thereby delaying (or avoiding) the use of DMDs.
Yes, This was a Soapbox thing.
Quix :((
>> Are you guys as angry as I am?
it is possible i reached that "angry" state long before you did. though I wouldn't wish that on anyone.
the 4 things you listed at the end is exactly what the VA does...to a large large degree. and you know this too. and many on this forum have been through the same via their own doctor.
no matter what objective tests are returned or what you "suggestively" state as a symptom, they come back with a negate via some study, not text book perfect, the mental angle, etc. it becomes all to obvious that they are not there to diagnosis you, but to NOT-diagnose. ask around, i speak the truth on that.
there is a 7-year time frame from release of active duty to diagnosis in order to be found service connected disabled % for these type of diseases. can you see now why the VA does so much to NOT-diagnoses in those 7 years? (note: i think i have that right??) i can see the VA neuro's just loving the Marshfield Clinic report.
the Marshfield Clinic and Mayo Clinic --- and who is paying them to come up with these results?
It might be soapbox, but it is also real
it is possible i reached that "angry" state long before you did. though I wouldn't wish that on anyone.
the 4 things you listed at the end is exactly what the VA does...to a large large degree. and you know this too. and many on this forum have been through the same via their own doctor.
no matter what objective tests are returned or what you "suggestively" state as a symptom, they come back with a negate via some study, not text book perfect, the mental angle, etc. it becomes all to obvious that they are not there to diagnosis you, but to NOT-diagnose. ask around, i speak the truth on that.
there is a 7-year time frame from release of active duty to diagnosis in order to be found service connected disabled % for these type of diseases. can you see now why the VA does so much to NOT-diagnoses in those 7 years? (note: i think i have that right??) i can see the VA neuro's just loving the Marshfield Clinic report.
the Marshfield Clinic and Mayo Clinic --- and who is paying them to come up with these results?
It might be soapbox, but it is also real
I started having symptoms in September of 2004 and by December of 2004 I was having to use a walker. Today I can only occasionally use my walker but spend most of my time in my power chair. I'm pretty sure I had a sudden disability that didn't improve much. What do you think? Good Lord, who prints this stuff any way?
I will be praying for them,
Carol
I will be praying for them,
Carol
Yeah, Quix, I have always wondered--people are not at all likely to come back to see neuros who dismissed their symptoms, so HOW in the hhhh do these doctors know that these folks end up with nothing but a "psychiatric" diagnosis? It makes no sense.
Has there ever been a study that follows people from doctor to doctor, over many years, to see what their eventual diagnosis is? THAT would be something to believe in.
Speaking of reliance on MRI, I'm sure I mentioned here that the last neuro I saw tells people (not me--since he never saw my previous reports, nor did he think I needed a new MRI) that if you don't have lesions on MRI, you BY DEFINITION don't have MS. He posts this all the time on an ask-the-doctor forum. I don't know how he gets away with it, as there are other (more knowledgeable) doctors on that forum, too.
Has there ever been a study that follows people from doctor to doctor, over many years, to see what their eventual diagnosis is? THAT would be something to believe in.
Speaking of reliance on MRI, I'm sure I mentioned here that the last neuro I saw tells people (not me--since he never saw my previous reports, nor did he think I needed a new MRI) that if you don't have lesions on MRI, you BY DEFINITION don't have MS. He posts this all the time on an ask-the-doctor forum. I don't know how he gets away with it, as there are other (more knowledgeable) doctors on that forum, too.
I woke up one day unable to walk straight, kept bouncing off of walls and unable to make it through a doorway without bouncing off the door jam. That was 2 years ago. I have been to months of PT, I am on a DMD and I have NEVER gotten myself back. I cannot work because of this. I have applied for disability and been denied. I would give almost anything to be able to walk right again.
One day I was fine, the next I was ruined.
One day I was fine, the next I was ruined.
The most disabling symptom was the vertigo/dizziness..it came on sudddenly and I couldnt get out of bed for quite awhile without help, it improved enough for me to drive, thats still questionable, and go to work. Even at work I was still holding on to walls so as not to fall. It got better, just been dizzy for 7 yrs now, it never goes away but will get better or worse at times.
The fatigue started not too long after, that stopped my driving. But the Dr gave me provigil and I was able to keep driving a bit. As you all know, the fatigue will stay with you.
Those are the ones that came on suddenly...the cog issues came on slow and just seem to get worse.
I was diagnosed in February 2009, looked that up because I always use the wrong dates.
meg
The fatigue started not too long after, that stopped my driving. But the Dr gave me provigil and I was able to keep driving a bit. As you all know, the fatigue will stay with you.
Those are the ones that came on suddenly...the cog issues came on slow and just seem to get worse.
I was diagnosed in February 2009, looked that up because I always use the wrong dates.
meg
I really would like to ear from as many people as possible. thanks. this is my first poll. I won't do it very often to you.
Quix
Quix
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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