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147426 tn?1317265632

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
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Avatar universal
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?


Helpful - 0
1295859 tn?1285267891
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.
Helpful - 0
147426 tn?1317265632
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

Helpful - 0
333672 tn?1273792789
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
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198419 tn?1360242356
I'm so behind! Sho, is this the link to the study too?

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333672 tn?1273792789
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
Helpful - 0
1260255 tn?1288654564
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.

Helpful - 0
333672 tn?1273792789
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
Helpful - 0
560501 tn?1383612740

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
                    
Helpful - 0
1252074 tn?1271541709
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.
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Avatar universal
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.

Helpful - 0
Avatar universal
>> 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).

Helpful - 0
751951 tn?1406632863
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.
Helpful - 0
738075 tn?1330575844
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
Helpful - 0
147426 tn?1317265632
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
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
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
Helpful - 0
147426 tn?1317265632
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
Helpful - 0
147426 tn?1317265632
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
Helpful - 0
378497 tn?1232143585
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
Helpful - 0
147426 tn?1317265632
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
Helpful - 0
378497 tn?1232143585
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
Helpful - 0
338416 tn?1420045702
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?
Helpful - 0
333672 tn?1273792789
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
Helpful - 0
751951 tn?1406632863
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?
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