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

Return to Poll

38%

 (18) 

I have MS and have suffered a sudden disability that did not improve much.

8%

 (4) 

I have MS and I have never suffered a sudden disability which did not improve much.

48%

 (23) 

I might have MS and I have suffered such a disability.

4%

 (2) 

I might have MS and I have never suffered such a disability.

47 Members voted

[Wobbly]

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

[Karen99]

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.  

[Ufrustrated2]

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".

[PastorDan]

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).

[Nancy T]

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.)

[slightlybroken]

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$#!%.

[Guitar_grrrl]

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.

[Eyesnlegs]

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!

[cainer]

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!!

[Phoenix177]

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

[jensequitur]

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.

[Quixotic1]

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  :((

[Ufrustrated2]

>> 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

[grannyhotwheels]

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

[Nancy T]

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.

[starryeyes1]

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.

[meg321]

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

[Quixotic1]

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

[Eyesnlegs]

bump

me on guys we get enough help from Quix

[Eyesnlegs]

damn keyboard - that should read 'come on'

[Mike_Shuswap]

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

[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?

[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

[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?

[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

[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, 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]

The Expanded Disability Status Scale is a complex scoring system for determining how well a person is functioning at a given time.  It is heavily weighted toward ability and stamina in walking, is difficult to score and tends to overlook the cognitive impairments of MS.

At an EDSS score of 6.0 someone is beginning to need assistance walking 100 meters.

At 5.5 a person is able to walk 100meters without rest or assistance, but cannot work a full day.

At 5.0 a person is able to walk 200 meters without assistance or rest, but needs special provisions to work through a full day.

I think the choice of 6.0 as when a disability is severe is somewhat arbitrary and misleading.  If a person is disabled enough that they must ask their employer to give them special provisions, they are at a critical point where their disability has impacted their work and might well threaten their job.  At 5.5 they are no longer able to work fulltime even with accomodations.  If you are that person, I guarantee that you are feeling mighty disabled.

Again, I think the study is misleading for the purposes of what the regular doc is going to tell his patients.  Using a cane or walker is NOT the only disability that knocks people out of lifes everyday activities.

Quix

[Quixotic1]

Jen - I think you have to ask yourself - Am I dis-abled by it.  If it isn't limiting to you in any large way, then no, it is not a disability. To me disabilities are life-altering.

Quix

[supermum_ms]

I feel i might need to appologise for opening up this can of worms, i found myself questioning fuzzy logic and was not at all reasured, I really didn't intent to upset anyone, I am sorry if anyone is. :-(

Personally i find this study appauling because it not only lends its findings to squ-iff the interpretation of a permanent disability, which in my mind is NOT just peoples physical abilities but it could also delay treatment with its questionable reasurance of time.

I chose 3)   I might have MS and I have suffered such a disability. Because i believe...

i: My cognitive issues are disabling TO ME, (though it probably isn't technically bad enough by medical diagnostics to be classed as such), it has altered how i talk, think and communicate and its permanent!

ii: My fatigue issuses are disabling TO ME, it varies on any given day, (though probably isn't technically bad enough by medical diagnostics to be classed as such), it has altered how i am able to function and interact with the world and its permanent!

iii: My balance issues are disabling TO ME, (though it probably isn't techinically bad enough by medical diagnostics to be classed as such), it has altered my mobility, i fall over a lot due to freezing lower limbs or instability and its permanent!

iiii: My tremor (s) are disabling TO ME, (though it probably isn't technically bad enough by medical diagnostics to be classed as such), these tremors affects everything i do because with any physical activity they range from being obvious and just annoying, to making it difficult for me to function independantly and its permanent!  

[permanent: unchangeable, irreversible, definite, everlasting, not temporary]

I classify these few listed things as permanent, due to there everlasting nature but i am better than i was last April, it is the TOTALITY of a few issues that make me permanently different and yes i am disabled by them but would not be classed as such due to individual scale ratings. A technicallity in diagnostics, from my perspective who i am and how I function, is affected on a daily basis, 12 months on and i can only speculate that this is as good as its going to get, so permanent.

For me, the end result is someone who can't move without assistance, snail pace and its physically exhausting trying to keep moving when my body is not in the mood to cooperate. I'm incapable of getting anything out of this body that resembles normal functions, walking and staying on my feet is labor intensive and hard work. I may not be technically classed as permanently disabled by diagnostic terms but i think i would like the dr's that came up with what constitutes even a permanent disablity to get on the roller coaster ride that my mind, body and sole is on, maybe it would get revised!


Cheers......JJ

[Quixotic1]

JJ - This is a great can of worms and brings up things a lot of us want to discuss.  I don't think there is any friction between any of us, so no worries about bringing it up.

All is well and would be weller without the Marshfield Clinic's input into the field.

Quix

[Guitar_grrrl]

Sorry for the following rant...stupid Marshfield jerks - it seems more like the ol' "publish or perish" disease.  This is against the first premise "first, do no harm".

That's all, rant over.
Guitar_grrrl

[PastorDan]

Tilt on, rant on, & go on.

If we don't open those cans, we'll leave them on the shelf until we need something of value, and only THEN find out they're full of worms.  We don't want our docs, families, or employers dining on them in the meanwhile.  Open them up, search out the worms, and if the contents are found to be wholesome, share them.  Otherwise, see that they get flushed thoroughly down the nearest drain.

Supermum, I hadn't even thought about my tremors and cog issues when I asked myself if I am disabled.  One more strike against my cognitive skills, if things like that would slip past me when I'm trying to assess that very arena.  Zheesh.

[steph74]

>> 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).

[steph74]

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.

[suzieqs]

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.

[tonyad]

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
                    

[shoshin]

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

[Audrey_M]

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.

[shoshin]

Well, Quix, I think your fears of any caveats or nuances being lost in dissemination have come true. Here is the summary of this study from Nature Reviews Neurology:

"Despite strong evidence that acute multiple sclerosis (MS) relapses usually have a benign natural history, many patients are still afraid that a relapse could result in permanent disability. In a study by Bejaoui and Rolak, 1,078 patients with relapsing–remitting MS experienced a total of 2,587 relapses, but only 7 sustained severe neurological impairment that failed to resolve. Given the rarity of permanently disabling MS relapses, the researchers propose that treatment decisions should not be driven by the fear of such eventualities."

http://www.nature.com/nrneurol/journal/v6/n5/full/nrneurol.2010.44.html#Multiple-sclerosis

(This is the full text, which you should be able to see if you create a free account)

sho

[sllowe]

I'm so behind! Sho, is this the link to the study too?

[shoshin]

No, that was just the link to that little in-brief review. There isn't anything more to that than what I quoted.

I am not sure you can get the whole original article for free. This is the thread that started the whole discussion, but it just links to a Medscape overview: http://www.medhelp.org/posts/Multiple-Sclerosis/Risk-of-sudden-irreversable-disability-is-rare-in-MS--paper/show/1204984

sho

[Quixotic1]

Thanks, Sho, I just KNEW that they would use this study this way.

"No, need to worry, little lady, that we aren';t going to give your a med for your MS.  We have evidence that it is very rare to have a relapse cause a severe disability, so we can just monitor you and it you get worse, we can "catch it in time"".

As I pointed out before, that study used a tremendously severe standard as it's endpoint.  Someone could suffer a sudden disability that caused them to no longer be able to work fulltime, but it would not have counted in that study as "severe".  This study will literally be used to pull the wool over people's eyes as they are reassured that there is no harm in not being aggressive about treating.

Another example is that someone who runs miles a day could suddenly only be able to walk 100 meters (two or three houses on a block) before they needed to rest.  That would not be considered a severe disability in this study.  But the neurologists will likely not read the study.  They will just remember that they have now been told that it is rare for someone to suffer a "sudden, severe disability."  And they will feel less urgency to make a diagnosis or to treat.

Arrggh!

Quix

[thornygates]

I would be in the "I might have MS and I have suffered such a disability." group.

I has a sudden onset of ataxia that has not improved. It has in fact gotten worse. in the past 4 years I have had other sudden symptoms that do improve but never get back to 'normal' for me. always just a little bit worse.

[Nickie72]

I'm gonna say what 4 out of 5 radiologist have written, and say that I have MS, even though I can't get a specialist to agree (migraine lesions!), but I've only seen 3 Neuro's since November. One gave me probable, I forgot. I need some time to get over my anger to try again with another Neuro.

With that being said, in 1998, I couldn't walk for 3 weeks due to severe spasticity in both calf muscles. You could actually see the tightness of the calf muscles and they wouldn't release/relax. It almost appeared that I was actually flexing my muscles when I wasn't and they froze in place.

During those weeks, my now ex husband massaged my legs day in and day out until the muscles released/relaxed, but my legs have never been the same since. Soon after that flare-up, my legs collapsed due to severe weakness, and have time and time again with many falls. I went from incredibly stiff hard muscles in my legs to rubber-like/jello legs, and I can no longer ride a bike which is devastating.

I just keep progressing and recently got over muscle atrophy in both legs, was home-bound for over a month because of it, and needed visiting nurses to help me, although I wasn't happy with their care. I also have sensory problems in my legs - partial numbness, patches that come and go, tingling, vibrations, and often times I feel my legs are ice cold, but when I ask someone to feel them, I am wrong about the temperature.

I'm unable to vote. Was there a time limit to this, or am I doing something wrong?