Question:
On Sun, 12 Sep 1999 16:56:41 GMT, BlessedBy2 <blessed…@home.com> wrote: >If they hadn’t spent research dollars and resources back then on >studying pre-cancerous skin growths, people would be dying today of >those cancers. What we can NOW call "mild" or benign pre-cancerous >growths could have become a killer. A lot of money, research, >resources, and public advocacy work went into the campaign to get >people to use sunscreen, stay out of the sun, watch for changes in the >skin … etc., etc. It did take a lot of money "back then." >Yes, I believe they should have spent those dollars then. "We," with >respect to TS, are still "back then." The reason my pre-cancer isn’t >a situation like Al’s is precisely because the research dollars were >spent back then, and the proper treatment protocol was identified. >That is what I advocate for with respect to TS.
Yup, I see your point. (<g> Now NOTE this and quit claiming that I ‘never’ see your point…and I have before,also!!) The study of the pre-cancerous stuff would lead to far fewer people ever getting to the cancerous stage…but it wouldn’t necessarily do anything to help the folks who were ALREADY at the cancerous stage. Vicki H.
Response:
In article <B101D182834F1197.CC93988D6E00B971.50BA641A86953…@lp.airnews.net>, vlh…@airmail.net (Vicki Hill) wrote: > On Sat, 11 Sep 1999 14:42:03 GMT, BlessedBy2 <blessed…@home.com> > wrote: > >So, Dom, you just don’t have TS. Neither does my son, once again. > BB2, your son is diagnosed. Dom said he is not diagnosed.
she. > My question, > which I still believe is relevant, is this: To what extent should > researchers seek out undiagnosed ‘cases’, and then use them as part of > the diagnosed group for research studies?
I’m wondering just what the TSA is for? Is it an organization that sits back and waits for people to come to them? Or does it take an active part in finding people who have TS and may not know it? I’m assuming it does spend a portion of it’s funding in campaigns to spread the word about TS to reach those people who still don’t know why the hell they do what they do? Does anyone object to that? Ater all, the very act of > seeking them out and diagnosing them moves them from the undiagnosed > to the diagnosed camp…and then would one presumably have to go find > MORE undiagnosed…but oops, if you diagnose them, then they move to > the diagnosed side and…see the dilemma?
I don’t see the dilemma. Because by reaching those people who’s TS isn’t problomatic enough to motivate them to see a doctor, we start to round out the milder end of representative TSers. Just because my TS didn’t send me to a doctor didn’t mean that I was living life just fine in my ignorance. I didn’t go see a doctor because I thought my tics and OC behavior were due to some huge character flaw, not a disorder. Just finding out what TS was brought me a tremendous amount of relief and created a base on which I could begin building my self-esteem. Must we deny that to others out there because THEY don’t feel it’s bothersome enough to see a doctor? Should studies be based on > the diagnosed population, or on the uncounted, uncharted, undiagnosed > population? And if you think the undiagnosed population should be part > of the studies, why?
Because it may bring a more complete understanding to TS in general. Presumably the undiagnosed population doesn’t > feel in need of diagnosis, so why would they feel in need of being > studied – versus the ones who are clearly diagnosed?
We can’t assume that they don’t feel in need of a diagnosis. Many, like me, were raised to be ashamed of our tics, OC behavior, etc. Like me, it may never have occured to them that it was anything that COULD be diagnosed. Many are out there thinking that something is wrong with THEM, that they’re crazy, or weak in being unable to control their body, or inherently bad in that they have to perform what they know are irrational rituals. And anyway, because I’m not diagnosed by a doctor, but rather self- diagnosed, does that leave me any less diagnosed? There’s no medical tests for it. > > But, to the mother of a son who has > >had some pretty significant incidents and times when he wasn’t doing > >fine — to someone who knows plenty of children "like mine" who still > >need help at times and may for, oh say, another 15 years or so > And your son IS diagnosed, BB2.
Only because a friend of her’s recognized the TS. Are we going to deny other parents and children a diagnosis because we don’t want to spend the money to reach them? Dominique 
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Response:
I don’t disagree with what you say. We are talking about different things. As in my example of LaCrete, there is a small homogenous population in which TS, from very mild to severe, appears in one out of six people, most of whom were never diagnosed until one of the most severe of them came to the attention of Roger Kurlan. Yes, it is a small sample because it is a very small town, but that has aided the collection of genetic data in relation to TS. And you can’t get any further from major, or even minor, medical research centers than Northern Alberta. So it is possible that in North Dakota a similar sample population may exist. It is also possible that a different picture of "average" cases of TS exists there. It is just as valid to study that population as it is to study those in urban populations you describe. In fact, if you want the whole picture, studies must be done in various settings. For example, what if living in a urban center triggers TS or exacerbates it, either because of stressors or environmental conditions, or living in urban centers makes TS more of an "issue"? How will we learn that unless "economically depressed" areas aren’t also studied? Aren’t the studies of prison populations valid as well to provide the total picture by comparing it to the affluent urban sample? Shouldn’t the major centers be spending more time focusing on the urban, economically depressed, non-affluent population as well? Isn’t it perhaps part of the problem that so much research has been done in those same urban centers on those cases that appear because they have sought out the researchers? Ellen, who *must* point out that not all people in North Dakota are dirt poor and uneducated (qualities which do not always go hand in hand) – Hide quoted text — Show quoted text -BlessedBy2 wrote: > Ellen wrote: > > BlessedBy2 wrote: > > > I’m not sure what comprises their > > > population sample. They’re in North Dakota … > > > BB2 > > I don’t think one can discount a study simply by its location. For example > > there is much to be learned about TS from small communities with small gene > > pools, hence the survey of those of particular Jewish descent with TS. One > > of those communities is the Mennonite town in Northern Alberta, the town of > > La Crete, in which TS is actually common (approximately one in six has it, > > as estimated by Roger Kurlan.) It would be hard to find a more remote > > setting than that one. Perhaps a similar population exists in North Dakota. > > Perhaps a respected researcher chooses to live in North Dakota. That > > doesn’t tell you where or how he or she was trained. > > A person can disagree because of methodology or qualifications or > > conclusions, but just because a study is done away from a coast doesn’t > > mean it isn’t valid. > > E > Ellen, we had a discussion about this some time ago, but my memory > fails me — I’m not sure if it was here on ast. Anyway, I’ll replay a > piece of it for you, so you can understand what I was referring to. > I do NOT know that I agree with this or whether there is any validity > to the notion: just replaying the discussion for what it’s worth — > it would be very interesting to see if Leslie or Roger are aware of > any studies that would shed light on this possibility. I believe > Vicki raised the same issue on another thread in the last few days. > The notion being *explored* was: > In areas of the country where socio-economic demographics are such > that very high disposable incomes combined with a high level of > post-graduate education surrounded by major urban centers with access > to a large number of teaching medical and research institutions, there > exists a possibility that there is a greater likelihood of "milder" > expressions of TS coming to diagnostic attention in greater > proportions than they would in more economically depressed regions. > In more depressed economic regions, there exists a possibility that > only the more severe expressions of a spectrum disorder will come to > diagnostic attention, as persons may not have the disposable income to > pursue the numerous visits often necessary to nail down a diagnosis, > or may not have access to the teaching institutions where there may be > more awareness of "milder" expressions of a spectrum disorder. > Vicki mentioned this before, I believe in the context of the size of > the membership of the TSA chapters on the East Coast. If I recall > correctly, she mentioned that her chapter is much smaller, and that > she was very unlikely to see as many "milder" expressions of TS as we > see quite often in the chapters on the East Coast. I believe she was > surprised at the very high number of children "like mine" that I know. > In our area, any child who is not "performing to potential" (sarcasm > in my voice there) is tested out the wazoo: parents here have the > resources and the access to the specialists. So "milder" anything is > very likely to be diagnosed. > With respect to North Dakota, again, I only said that I don’t know > what their sample population is. It’s the same concern I had with the > fellow in Fairfield. Is it a psychiatric hospital, an in-patient > clinic, etcetera, etcetera … how large are the sample populations, > all those sorts of questions. But besides that, the other question > is: is "milder" TS more likely to be recognized in affluent areas > surrounded by major teaching hospitals? I dunno … it is an > interesting question. > BB2
Response:
> Only because a friend of her’s recognized the TS. Are we going to deny > other parents and children a diagnosis because we don’t want to spend > the money to reach them? > Dominique
The problem is where does one find ‘us?’ The same places one finds anyone else, of course. The only way to reach ‘us’ is through publicity. That’s how I was ‘discovered.’ I read about it in a magazine, got connected with TSA,and the rest,as they say, is history. I felt like you, relieved. Unfortunately, we don’t always have the final say-so over HOW the information is presented. It takes time to make it more palatable to all of us. For example, some of you may recall the earlier Povich shows (among others) in which people with TS were portrayed in the worst possible ways. Several years, and LOTS of letters later, the tenor of those shows changed so much so that Povich himself became a ’spokesperson’ of sorts, for TSA. Having seen all the shows, I can tell you the metamorphosis was measurable. However, TSA (and any other organization in similar circumstances) fights, constantly, the producers/writers quest for ‘ratings.’ And sadly, ‘ratings’ are often higher in shows in which the ‘worst cases’ are prevalent. So, in spite of the fact that we try to bring the Pendulum back to center, we don’t have the final ’say-so’ when push comes to shove. On the GOOD side of the equation, even those ‘worst case’ shows produce good results. The phones at TSA ring OFF the hook for days afterwards. People see themselves in some capacity, or a friend or loved one, who has something similar, not always ‘worst cases,’ and get DXed because of them. KAT In CT
Response:
Ellen wrote: > I don’t disagree with what you say. We are talking about different things.
Yep ! We just have to know what the sample population is in order to be able to try to interpret the results … BB2
Response:
BlessedBy2 wrote: > I’m not sure what comprises their > population sample. They’re in North Dakota … > BB2
I don’t think one can discount a study simply by its location. For example there is much to be learned about TS from small communities with small gene pools, hence the survey of those of particular Jewish descent with TS. One of those communities is the Mennonite town in Northern Alberta, the town of La Crete, in which TS is actually common (approximately one in six has it, as estimated by Roger Kurlan.) It would be hard to find a more remote setting than that one. Perhaps a similar population exists in North Dakota. Perhaps a respected researcher chooses to live in North Dakota. That doesn’t tell you where or how he or she was trained. A person can disagree because of methodology or qualifications or conclusions, but just because a study is done away from a coast doesn’t mean it isn’t valid. E
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Sorry, don’t know why Netscape is suddenly so screwy lately for me. Ignore this: – Hide quoted text — Show quoted text -Ellen wrote: > ———————————————————————— > Name: elune.vcf > elune.vcf Type: VCard (text/x-vcard) > Encoding: 7bit > Description: Card for Ellen
Response:
These guys (at least Kerbeshian & Burd) are colleagues of mine but at least in the abstract, they don’t mention that their figures are based upon referred cases, not non-referred or community cases, and that the percentages are dependent upon referral biases at each center. They are co-authors on our first paper from the international database, which will be published in a few months in "Developmental Medicine & Child Neurology," based on 3,250 cases from 21 countries. Roger – Hide quoted text — Show quoted text -Patti wrote: > BB2 wrote: > <This is the page I wrote a letter about because it claims that 60-80% > of persons with TS have "behavior problems> > OK BB2, > Set us strait! Tell us the real deal! And back it up! > What is the percentage of person’s diagnosed with TS who also just so happen to > have "behavior problems?" > Patti > Keep asking questions!
Response:
Dr. Freeman, I don’t know if you’ve been to the website in mention, but it is EXTREMELY well written and well presented: it should be a resource that we could offer to everyone because of its excellent and complete presentation. It is aimed specifically at family physicians, in order to educate them about Tourette. And family physicians — along with a lot of other specialists who should have known better — are exactly the ones who missed my son’s TS and insisted that a "nice, well-behaved, well-liked, academically-successful, sociable" child could not have TS because TS only affected "thoooosssssssse kids." This is specifically the kind of misinformation that family physicians need to be made aware of !!! "Nice" children get TS too ! Please, if you have a relationship with these fellows, prevail upon them to correct that misperception in their literature, as it will impact upon the ability of the audience it is aimed at — family physicians — to correctly detect and diagnose TS. I would understand the statement about clinically-referred behavioral problems much better if their website had been aimed at clinical populations; but it is not. It is aimed at family physicians: the pediatrician who is the first line of defense and may be in a position to help a child like mine was three years ago — a "nice" child who tics. Regards, BB2 – Hide quoted text — Show quoted text -"Roger D. Freeman" wrote: > These guys (at least Kerbeshian & Burd) are colleagues of mine but at > least in the abstract, they don’t mention that their figures are based > upon referred cases, not non-referred or community cases, and that the > percentages are dependent upon referral biases at each center. > They are co-authors on our first paper from the international database, > which will be published in a few months in "Developmental Medicine & > Child Neurology," based on 3,250 cases from 21 countries. > Roger > Patti wrote: > > BB2 wrote: > > <This is the page I wrote a letter about because it claims that 60-80% > > of persons with TS have "behavior problems> > > OK BB2, > > Set us strait! Tell us the real deal! And back it up! > > What is the percentage of person’s diagnosed with TS who also just so happen to > > have "behavior problems?" > > Patti > > Keep asking questions!
Response:
On Mon, 13 Sep 1999 05:00:30 GMT, haejint…@my-deja.com wrote: >Ater all, the very act of >> seeking them out and diagnosing them moves them from the undiagnosed >> to the diagnosed camp…and then would one presumably have to go find >> MORE undiagnosed…but oops, if you diagnose them, then they move to >> the diagnosed side and…see the dilemma? >I don’t see the dilemma. Because by reaching those people who’s TS >isn’t problomatic enough to motivate them to see a doctor, we start to >round out the milder end of representative TSers.
Then let me try again. If we haven’t rounded out the spectrum until we have included a representative sample of the undiagnosed, then how do we ever know that we have rounded out the sample? Because the only way we locate the undiagnosed to include in a sample is to diagnose them. And then they become part of the diagnosed…but maybe there are STILL an unknown number of the undiagnosed out there, so maybe our research STILL doesn’t include a representative number of the undiagnosed…. >Just because my TS didn’t send me to a doctor didn’t mean that I was living life just fine >in my ignorance. I didn’t go see a doctor because I thought my tics and >OC behavior were due to some huge character flaw, not a disorder. Just >finding out what TS was brought me a tremendous amount of relief and >created a base on which I could begin building my self-esteem. Must we >deny that to others out there because THEY don’t feel it’s bothersome >enough to see a doctor?
Yes, I see your point. My point is this: how SHOULD research address the undiagnosed? And does there come a point at which we may not be totally sure that we are still researching the same thing as the population which is diagnosed? >And anyway, because I’m not diagnosed by a doctor, but rather self- >diagnosed, does that leave me any less diagnosed? There’s no medical >tests for it.
It would leave you undiagnosed in the sense that you wouldn’t be in any doctor’s data bank of cases, so a researcher contacting neurologists and psychiatrists looking for cases for a study wouldn’t come across your name. And if by chance someone did somehow come up with your name, then I would imagine they would want to ‘confirm’ your diagnosis before including you in a study sample of folks with TS – else how would they be able to say for sure that their study was of folks with TS? >Only because a friend of her’s recognized the TS. Are we going to deny >other parents and children a diagnosis because we don’t want to spend >the money to reach them?
I thoroughly support TSA’s efforts to inform about TS, to help people learn about it so that, if they think they or a family member has TS, they can seek diagnosis. What I don’t necessarily agree with is that research should be geared to seeking out undiagnosed cases. I see nothing wrong with research being based on diagnosed cases and stating as such. Vicki H.
Response:
- Hide quoted text — Show quoted text -Ellen wrote: > BlessedBy2 wrote: > > I’m not sure what comprises their > > population sample. They’re in North Dakota … > > BB2 > I don’t think one can discount a study simply by its location. For example > there is much to be learned about TS from small communities with small gene > pools, hence the survey of those of particular Jewish descent with TS. One > of those communities is the Mennonite town in Northern Alberta, the town of > La Crete, in which TS is actually common (approximately one in six has it, > as estimated by Roger Kurlan.) It would be hard to find a more remote > setting than that one. Perhaps a similar population exists in North Dakota. > Perhaps a respected researcher chooses to live in North Dakota. That > doesn’t tell you where or how he or she was trained. > A person can disagree because of methodology or qualifications or > conclusions, but just because a study is done away from a coast doesn’t > mean it isn’t valid. > E
Ellen, we had a discussion about this some time ago, but my memory fails me — I’m not sure if it was here on ast. Anyway, I’ll replay a piece of it for you, so you can understand what I was referring to. I do NOT know that I agree with this or whether there is any validity to the notion: just replaying the discussion for what it’s worth — it would be very interesting to see if Leslie or Roger are aware of any studies that would shed light on this possibility. I believe Vicki raised the same issue on another thread in the last few days. The notion being *explored* was: In areas of the country where socio-economic demographics are such that very high disposable incomes combined with a high level of post-graduate education surrounded by major urban centers with access to a large number of teaching medical and research institutions, there exists a possibility that there is a greater likelihood of "milder" expressions of TS coming to diagnostic attention in greater proportions than they would in more economically depressed regions. In more depressed economic regions, there exists a possibility that only the more severe expressions of a spectrum disorder will come to diagnostic attention, as persons may not have the disposable income to pursue the numerous visits often necessary to nail down a diagnosis, or may not have access to the teaching institutions where there may be more awareness of "milder" expressions of a spectrum disorder. Vicki mentioned this before, I believe in the context of the size of the membership of the TSA chapters on the East Coast. If I recall correctly, she mentioned that her chapter is much smaller, and that she was very unlikely to see as many "milder" expressions of TS as we see quite often in the chapters on the East Coast. I believe she was surprised at the very high number of children "like mine" that I know. In our area, any child who is not "performing to potential" (sarcasm in my voice there) is tested out the wazoo: parents here have the resources and the access to the specialists. So "milder" anything is very likely to be diagnosed. With respect to North Dakota, again, I only said that I don’t know what their sample population is. It’s the same concern I had with the fellow in Fairfield. Is it a psychiatric hospital, an in-patient clinic, etcetera, etcetera … how large are the sample populations, all those sorts of questions. But besides that, the other question is: is "milder" TS more likely to be recognized in affluent areas surrounded by major teaching hospitals? I dunno … it is an interesting question. BB2
Response:
Vicki Hill wrote: > Good analogy, BB2 – would you be asking the American Cancer Society to > pay as much attention to cases like yours, especially in terms of > research dollars, as to cases like Al’s? Would you be asking the > American Cancer Society to rewrite its literature that addresses Al’s > needs because it isn’t user-friendly enough to meet your needs? Or > would you simply look at their literature on pre-cancerous growths and > be glad that the other literature didn’t apply to your situation? > Would you be telling Al to look to other diagnoses, because there are > many cases of cancer that don’t have the level of difficulties that > his may have had, and you wouldn’t want people to have the wrong > impression of cancer?
Go back ten years (I dunno, maybe fifteen – I don’t know that much about cancer research). And think of us as being "back then," with TS research still in its infancy in many ways. If they hadn’t spent research dollars and resources back then on studying pre-cancerous skin growths, people would be dying today of those cancers. What we can NOW call "mild" or benign pre-cancerous growths could have become a killer. A lot of money, research, resources, and public advocacy work went into the campaign to get people to use sunscreen, stay out of the sun, watch for changes in the skin … etc., etc. It did take a lot of money "back then." Yes, I believe they should have spent those dollars then. "We," with respect to TS, are still "back then." The reason my pre-cancer isn’t a situation like Al’s is precisely because the research dollars were spent back then, and the proper treatment protocol was identified. That is what I advocate for with respect to TS. BB2
Response:
Very intersting. I was net.surfing around for some TS sites, and I found this one. I haven’t read the whole thing yet, but a skim tells me this is a pretty good page. http://www.aafp.org/afp/990415ap/2263.html -Greg G — -Greg "TORCHA" Gershowitz -DGX3K’s own Extreme Icon To Reply: See the organization line Spam sucks. Fuck you spammers. Have a Nice Day. http://www.geocities.com/Area51/5207
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This is the page I wrote a letter about because it claims that 60-80% of persons with TS have "behavior problems" along with a couple of other small technicalities that they didn’t seem to get quite right; some indications of lack of recognition of ascertainment bias. It’s also by the same guys who have done the bipolar studies I was referring Vicki to the other day. I’m not sure what comprises their population sample. They’re in North Dakota … BB2 – Hide quoted text — Show quoted text -Greg Gershowitz wrote: > Very intersting. I was net.surfing around for some TS sites, and I > found this one. I haven’t read the whole thing yet, but a skim tells > me this is a pretty good page. > http://www.aafp.org/afp/990415ap/2263.html > -Greg G > — > -Greg "TORCHA" Gershowitz > -DGX3K’s own Extreme Icon > To Reply: See the organization line > Spam sucks. Fuck you spammers. Have a Nice Day. > http://www.geocities.com/Area51/5207
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- Hide quoted text — Show quoted text -Greg Gershowitz wrote: > Very intersting. I was net.surfing around for some TS sites, and I > found this one. I haven’t read the whole thing yet, but a skim tells > me this is a pretty good page. > http://www.aafp.org/afp/990415ap/2263.html > -Greg G > — > -Greg "TORCHA" Gershowitz > -DGX3K’s own Extreme Icon > To Reply: See the organization line > Spam sucks. Fuck you spammers. Have a Nice Day. > http://www.geocities.com/Area51/5207
very good site. thanks for posting!
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Greg G. sent us this website: < http://www.aafp.org/afp/990415ap/2263.html > Cool website Greg! I’ve never seen it before! thanks for passing it along! Patti Keep asking questions!
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BB2 wrote:
<This is the page I wrote a letter about because it claims that 60-80% of persons with TS have "behavior problems> OK BB2, Set us strait! Tell us the real deal! And back it up! What is the percentage of person’s diagnosed with TS who also just so happen to have "behavior problems?" Patti Keep asking questions!
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>BB2 wrote: ><This is the page I wrote a letter about because it claims that 60-80% >of persons with TS have "behavior problems> >OK BB2, >Set us strait! Tell us the real deal! And back it up! >What is the percentage of person’s diagnosed with TS who also just so happen >to >have "behavior problems?" >Patti >Keep asking questions
I think the point is that there are biases in many of these studies. For example, many people agree that there’s a large amount of people with TS that never go to a doctor or clinic about their symptoms because they don’t find the tics enough of a problem to warrent doing so. I’m one of these people. I’ve never been officially diagnosed, and will probably never bother to do so. Therefore, the doctors are only seeing a portion of the whole TS community. They’re seeing a portion that may be more likey to have the OTHER issues, such as OCD, or ADD because they have more motivation to see the doctor in the first place. So, to state that any percentage of TSers are more likely to have accompanying disorders is rather presumptive. Dominique
Response:
On 11 Sep 1999 07:00:46 GMT, haejint…@aol.com (Haejintien) wrote: >I think the point is that there are biases in many of these studies. For >example, many people agree that there’s a large amount of people with TS that >never go to a doctor or clinic about their symptoms because they don’t find the >tics enough of a problem to warrent doing so. I’m one of these people. I’ve >never been officially diagnosed, and will probably never bother to do so.
Patti did ask the question in terms of those who have been diagnosed. As to those who have never been diagnosed, that would apply to any disease/disorder/syndrome, etc. I’ll go back to the analogy with diabetes. It is commonly known/assumed that many, many people have diabetes without being diagnosed. And yet…should research on diabetes focus on those who don’t even know they have it, or may suspect they have it but haven’t been diagnosed? Should medication research be focused on them? Should studies of how diabetes responds to xyz be pounding the bushes looking for people who aren’t even diagnosed? Some might say yes, that would give you the ‘true’ picture of diabetes. But if you change diabetes into something where the vast majority who have it don’t even notice it…is it still diabetes? Is it still the same disorder that we think of as causing insulin-monitoring? Because those ‘cases’ obviously don’t require insulin-monitoring. Or is there simply a continuous spectrum (oops- there is that word again) from ‘normal’ to ‘diabetic’, and at some point along that continuum we choose to mark the spot "from here on, we call it diabetes". I know there is considerable disagreement about the DSM criteria for TS. And I’ll agree that, as written, it is poorly worded. But I suspect what the authors were trying to get at is that there is some point at which tics become a syndrome, some point on the continuum from ‘normal’ to ‘TS’ where we say ‘from here on, we call it TS’. Where is that defining mark? Who knows??? >Therefore, the doctors are only seeing a portion of the whole TS community.
Or are we trying to redefine TS in a way that it really isn’t a medical syndrome? Just as being blonde or brunette or redhead isn’t a syndrome, but just is? And then what about those persons who have TS to the extent that it IS a medical syndrome, that the symptoms of the disorder ARE problematic enough to bring them to contact doctors, to get a diagnosis? >They’re seeing a portion that may be more likey to have the OTHER issues, such >as OCD, or ADD because they have more motivation to see the doctor in the first >place.
Or are we here trying to redefine TS in terms of the population who has tics but no ’syndrome’. If those who bother to see a doctor about a medical syndrome are not considered representative of the medical syndrome…then what exactly is ‘medical’ about the syndrome? Obviously I’m not talking about folks who truly have a ‘medical’ issue but have not yet been successful in locating a doctor who recognizes the syndrome when it stares them in the face. But I am questioning the focus on those who are not diagnosed, have not seen a doctor, do not seem to have a ‘medical’ syndrome. Sorry, Dominique, I really do not mean to be picking on you personally. My concern is with focus on ‘what is TS’ in those who don’t have enough of a ‘medical’ side to it to even seek diagnosis as a ‘medical’ syndrome in the first place. It all comes back to the question: just exactly what IS TS? Vicki H.
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*EVEN in CLINICAL* populations, I’d be interested in seeing where he gets his 60-80% figure. But I’m not sure Patti understands the differences or the concept. BB2 – who always backs it up, and wants Burd and Kebeshian to do the same. – Hide quoted text — Show quoted text -Haejintien wrote: > >BB2 wrote: > ><This is the page I wrote a letter about because it claims that 60-80% > >of persons with TS have "behavior problems> > >OK BB2, > >Set us strait! Tell us the real deal! And back it up! > >What is the percentage of person’s diagnosed with TS who also just so happen > >to > >have "behavior problems?" > >Patti > >Keep asking questions > I think the point is that there are biases in many of these studies. For > example, many people agree that there’s a large amount of people with TS that > never go to a doctor or clinic about their symptoms because they don’t find the > tics enough of a problem to warrent doing so. I’m one of these people. I’ve > never been officially diagnosed, and will probably never bother to do so. > Therefore, the doctors are only seeing a portion of the whole TS community. > They’re seeing a portion that may be more likey to have the OTHER issues, such > as OCD, or ADD because they have more motivation to see the doctor in the first > place. > So, to state that any percentage of TSers are more likely to have accompanying > disorders is rather presumptive. > Dominique
Response:
So, Dom, you just don’t have TS. Neither does my son, once again. Even though the TSA Medical Advisory Board and most experts in the field agree that you and he do have TS. In fact, they generally concede that even chronic tic disorders are probably part of TS. Whether or not you’re "medical" may be no skin off your back anyway, ‘cuz you’re all grown up and doing fine … maybe it makes no difference in your life, I dunno. But, to the mother of a son who has had some pretty significant incidents and times when he wasn’t doing fine — to someone who knows plenty of children "like mine" who still need help at times and may for, oh say, another 15 years or so — I find it very frightening that someone who represents the TSA on a chapter level continues to imply that my child doesn’t even have TS. I DO believe that Vicki is NOT the type of person who would apply this logic to those who walk into her chapter in need of help — I have no reason to believe she would do that, but I sure wish she could practice that here. I guess this pre-cancerous growth I had removed from my hand means I’m not "medical" either, ‘cuz it didn’t cause me a problem as large as Kat’s Al’s "real" cancer did. Maybe I’ll just ignore the other ones on my back … BB2 – who is going to continue reading up on Medscape about the effects of Post Traumatic Stress Disorder on children with other psychiatric diagnoses, and reminding myself all the while that my son isn’t "medical" and the research about PTSD comorbid with other issues just doesn’t apply to him. Sticking my head in the sand would be so nice … after all, what can *I* possibly have to worry about with wonderful children "like mine." – Hide quoted text — Show quoted text -Vicki Hill wrote: > On 11 Sep 1999 07:00:46 GMT, haejint…@aol.com (Haejintien) wrote: > >I think the point is that there are biases in many of these studies. For > >example, many people agree that there’s a large amount of people with TS that > >never go to a doctor or clinic about their symptoms because they don’t find the > >tics enough of a problem to warrent doing so. I’m one of these people. I’ve > >never been officially diagnosed, and will probably never bother to do so. > Patti did ask the question in terms of those who have been diagnosed. > As to those who have never been diagnosed, that would apply to any > disease/disorder/syndrome, etc. > I’ll go back to the analogy with diabetes. It is commonly > known/assumed that many, many people have diabetes without being > diagnosed. And yet…should research on diabetes focus on those who > don’t even know they have it, or may suspect they have it but haven’t > been diagnosed? Should medication research be focused on them? Should > studies of how diabetes responds to xyz be pounding the bushes looking > for people who aren’t even diagnosed? > Some might say yes, that would give you the ‘true’ picture of > diabetes. But if you change diabetes into something where the vast > majority who have it don’t even notice it…is it still diabetes? Is > it still the same disorder that we think of as causing > insulin-monitoring? Because those ‘cases’ obviously don’t require > insulin-monitoring. Or is there simply a continuous spectrum (oops- > there is that word again) from ‘normal’ to ‘diabetic’, and at some > point along that continuum we choose to mark the spot "from here on, > we call it diabetes". > I know there is considerable disagreement about the DSM criteria for > TS. And I’ll agree that, as written, it is poorly worded. But I > suspect what the authors were trying to get at is that there is some > point at which tics become a syndrome, some point on the continuum > from ‘normal’ to ‘TS’ where we say ‘from here on, we call it TS’. > Where is that defining mark? Who knows??? > >Therefore, the doctors are only seeing a portion of the whole TS community. > Or are we trying to redefine TS in a way that it really isn’t a > medical syndrome? Just as being blonde or brunette or redhead isn’t a > syndrome, but just is? And then what about those persons who have TS > to the extent that it IS a medical syndrome, that the symptoms of the > disorder ARE problematic enough to bring them to contact doctors, to > get a diagnosis? > >They’re seeing a portion that may be more likey to have the OTHER issues, such > >as OCD, or ADD because they have more motivation to see the doctor in the first > >place. > Or are we here trying to redefine TS in terms of the population who > has tics but no ’syndrome’. If those who bother to see a doctor about > a medical syndrome are not considered representative of the medical > syndrome…then what exactly is ‘medical’ about the syndrome? > Obviously I’m not talking about folks who truly have a ‘medical’ issue > but have not yet been successful in locating a doctor who recognizes > the syndrome when it stares them in the face. But I am questioning the > focus on those who are not diagnosed, have not seen a doctor, do not > seem to have a ‘medical’ syndrome. > Sorry, Dominique, I really do not mean to be picking on you > personally. My concern is with focus on ‘what is TS’ in those who > don’t have enough of a ‘medical’ side to it to even seek diagnosis as > a ‘medical’ syndrome in the first place. It all comes back to the > question: just exactly what IS TS? > Vicki H.
Response:
> What is the percentage of person’s diagnosed with TS who also just so happen to > have "behavior problems?" > Patti > Keep asking questions!
Patti, I"m not the ’statistician’ amongst us, but I do have something to add to this discussion. The issue is often what precisely are ‘behavior problems.’ What’s a ‘problem’ in one instance, to one individual or family or teacher, is NOT necessarily a ‘problem’ to another. In fact, in some countries, TS isn’t even considered an anomaly, and the associated behaviors are not considered ‘problems’ at all. In fact, in one scientific study, researchers had to adjust their criteria for examination of the affected individuals because in that society, there WERE no ‘behavioral problems’ according to the locals, as defined in THIS country. Just another wrinkle in this whole thing. KAT in CT
Response:
> In fact, in one >scientific study, researchers had to adjust their criteria for examination >of the affected individuals because in that society, there WERE no >’behavioral problems’ according to the locals, as defined in THIS country. >Just another wrinkle in this whole thing. >KAT in CT
And doesn’t this point out an inherent component of TS, that being "socially unacceptable" actions/movements? We’ve had this debate before as to if TS is not actually a wider societal disorder vs. a personal disorder. Additionally, I think that you would have to look at societies that have more puritanical socialization, (England and colonized entities of England), (i.e. more social order bound or *uptight* as some might say), to see if the "reported" cases of TS are higher. Marietta AST visitor and contributor since -1996
Response:
In article <670A21D102005DC6.47FD486FE5D01CC6.E432CBA991A15…@lp.airnews.net>, vlh…@airmail.net (Vicki Hill) wrote: > I’ll go back to the analogy with diabetes. It is commonly > known/assumed that many, many people have diabetes without being > diagnosed. And yet…should research on diabetes focus on those who > don’t even know they have it, or may suspect they have it but haven’t > been diagnosed?
While many people with TS may not know they have it, I’m sure they know they tic. and I don’t SUSPECT I have TS, I know. I don’t need to shell out several hundred dollars to have a doctor tell me what I already know. > Should medication research be focused on them? Should > studies of how diabetes responds to xyz be pounding the bushes looking > for people who aren’t even diagnosed?
Regarding TS, maybe not MEDICATION studies, but certainly studies in which they’re trying to understand the disorder in general. > Some might say yes, that would give you the ‘true’ picture of > diabetes. But if you change diabetes into something where the vast > majority who have it don’t even notice it…is it still diabetes?
Because I don’t medicate my tics, and they don’t interfere with my enjoyment of life doesn’t mean I don’t notice them. > Or are we trying to redefine TS in a way that it really isn’t a > medical syndrome? Just as being blonde or brunette or redhead isn’t a > syndrome, but just is? And then what about those persons who have TS > to the extent that it IS a medical syndrome, that the symptoms of the > disorder ARE problematic enough to bring them to contact doctors, to > get a diagnosis?
I don’t think anyone’s trying to redefine TS as NOT medical syndomre.I think the hair color analogy was in response to the frustrations many adults feel when constantly reading about parents wanting to medicate away an eye-blinking tic, or a sniffing tic. If people would just be a bit more accepting of tic, a LOT OF US wouldn’t feel the pressure to be on meds. That’s not saying that there aren’t those out there that will still need meds. But a lot of kids are ONLY on it because of the reactions of others. > Or are we here trying to redefine TS in terms of the population who > has tics but no ’syndrome’. If those who bother to see a doctor about > a medical syndrome are not considered representative of the medical > syndrome…then what exactly is ‘medical’ about the syndrome?
Does my refusal to see a doctor make my TS label any less valid? While I sit here at my computer grunting and blinking and grimacing and tightening my stomach muscles and stamping my feet and banging my wrists on my desk and rolling my shoulders and tossing my head and tensing my neck, etc. etc., my TS is less valid that that of a child who’s parents were concerned enough about an eye-blinking and a sniffing tic??? > Obviously I’m not talking about folks who truly have a ‘medical’ issue > but have not yet been successful in locating a doctor who recognizes > the syndrome when it stares them in the face. But I am questioning the > focus on those who are not diagnosed, have not seen a doctor, do not > seem to have a ‘medical’ syndrome.
ROFL!! OK!! I guess that the fact that I refuse to get glasses makes me not near-sighted either? > Sorry, Dominique, I really do not mean to be picking on you > personally.
I’m sorry if you see it as picking on me. I just see it as debating an issue… Now, if you start telling me I’m too young and immature to know what I’m talking about, and that I have a lot more of life to experience before I could possibly have an intelligent point of view, THEN I’ll think you’re picking on me personally! LOL!!! My concern is with focus on ‘what is TS’ in those who > don’t have enough of a ‘medical’ side to it to even seek diagnosis as > a ‘medical’ syndrome in the first place.
But that’s all relative. I know of a LOT of people who have WAY milder TS than I do, but for them it’s a big deal and they want to medicate (or their parents want to medicate them). Does that make my TS non- existant? Is it just a ‘tic disorder’? It all comes back to the > question: just exactly what IS TS?
And because we don’t know, isn’t it a good idea to study all levels of tic disorders?? Isn’t it fair to reach out for all levels? Just because tics are mild enough that they don’t drive someone to a doctor doesn’t mean that not knowing what’s goin’ on is easy. Finding out about TS was one of the most important steps on learning to accept myself. But that wouldn’t have happened if the TV show I saw only showed the worst of TS, had they not shown a child who’s biggest issue was facial ticcing. > Vicki H.
Dominique Sent via Deja.com http://www.deja.com/ Share what you know. Learn what you don’t.
Response:
On Sat, 11 Sep 1999 14:42:03 GMT, BlessedBy2 <blessed…@home.com> wrote: >So, Dom, you just don’t have TS. Neither does my son, once again.
BB2, your son is diagnosed. Dom said he is not diagnosed. My question, which I still believe is relevant, is this: To what extent should researchers seek out undiagnosed ‘cases’, and then use them as part of the diagnosed group for research studies? After all, the very act of seeking them out and diagnosing them moves them from the undiagnosed to the diagnosed camp…and then would one presumably have to go find MORE undiagnosed…but oops, if you diagnose them, then they move to the diagnosed side and…see the dilemma? Should studies be based on the diagnosed population, or on the uncounted, uncharted, undiagnosed population? And if you think the undiagnosed population should be part of the studies, why? Presumably the undiagnosed population doesn’t feel in need of diagnosis, so why would they feel in need of being studied – versus the ones who are clearly diagnosed? > But, to the mother of a son who has >had some pretty significant incidents and times when he wasn’t doing >fine — to someone who knows plenty of children "like mine" who still >need help at times and may for, oh say, another 15 years or so
And your son IS diagnosed, BB2. > I find it very frightening that someone who represents the TSA on a >chapter level continues to imply that my child doesn’t even have TS.
By joining TSA, by volunteering my time for TSA, I am not entitled to ask philosophical questions about TS? About the nature of TS? About what is and what isn’t TS? About what should or should not be part of research studies about TS? Why, BB2? >I DO believe that Vicki is NOT the type of person who would apply this >logic to those who walk into her chapter in need of help
IF someone is in need of help for TS, then presumably they have a diagnosis of TS, or a diagnosable case of TS (and are in the process of seeking a diagnosis). The person who is undiagnosed, who does not see him- or herself in need of help in some fashion is highly unlikely to ‘walk into her chapter in need of help’. >– I have no reason to believe she would do that, but I sure wish she could >practice that here.
Why attack me for asking a philosophical question about the nature of TS? >I guess this pre-cancerous growth I had removed from my hand means I’m >not "medical" either, ‘cuz it didn’t cause me a problem as large as >Kat’s Al’s "real" cancer did. Maybe I’ll just ignore the other ones >on my back …
Good analogy, BB2 – would you be asking the American Cancer Society to pay as much attention to cases like yours, especially in terms of research dollars, as to cases like Al’s? Would you be asking the American Cancer Society to rewrite its literature that addresses Al’s needs because it isn’t user-friendly enough to meet your needs? Or would you simply look at their literature on pre-cancerous growths and be glad that the other literature didn’t apply to your situation? Would you be telling Al to look to other diagnoses, because there are many cases of cancer that don’t have the level of difficulties that his may have had, and you wouldn’t want people to have the wrong impression of cancer? Perhaps we do differ in opinion here, because I would really want the American Cancer Society focusing on cases like his. Yes, I would want literature with warning signs, to catch those pre-cancerous growths. But I wouldn’t expect that to be in all the literature. I wouldn’t expect all the literature to point out how many more people find and catch pre-cancerous growths than are diagnosed with cancer and have to treat it aggressively. It is a matter of focus; perhaps mine is simply different from yours. Vicki H.
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