Are doctors quick to know?
Question:
dcfie…@aol.com (DCFields) wrote:
But, I hope that researchers do look into this >phenonema since we are talking about genetics. >Other diseases such as Tay- Sachs are predominately found in Eastern >European Jewish desendants. But, Tay-Sachs can be found in many ethnic >groups.
This issue has been examined somewhat..and the prevalence of TS amongst certain religious affiliations is thought to be because of the cultural predispositions of those families to look more closely "within" and seek help for each other. Tay Sachs is found predominantly within the Ashkenazi Jews, as that’s the part of the world where the gene no doubt first mutated. LIke Sickle Cell Anemia in Africa and Eastern Med….. The question, from the evolutionary standpoint is where precisely the "gene" or genes evolved. That would tell us more info about WHY it evolved. Currently, nobody has the final word on the TS gene(s) in that regard, because it is found all over the world, and probably so far back as to render it impossible, at this time, to isolate in terms of origins. The Jewish community is notably represented…as TSA was founded primarily by 5 Jewish families 25 years ago. Communications within the Jewish community are, in part, responsible for the prevalence of Jewish people involved..culturally, Jews are people who "get involved" more than some of the rest of us. That explains part of it. It is possible, of course, that the origins of the gene are to be found in those parts of the world where Jews lived. There was one very old study that suggested, however, that the original mutation occurred along the East German border in the 1600’s. I do NOT recall the study or where specifically I read that, unfortunately, so I can’t cite it….I do recall wondering, "How the @#$% do ‘they’ know that? ??" In any case, until we can isolate the specific gene or genes, it’ll be hard to figure out precisely who has it and who doesn’t. KAT in CT
Response:
BWHM…@prodigy.com (Kathryn Taubert) wrote:
<edited for brevity> >In any case, until we can isolate the specific gene or genes, it’ll be >hard to figure out precisely who has it and who doesn’t. >KAT in CT
Is it proven that TS is genetic? Maybe TS is caused by a software problem? Or even a trace element deficiency? Maybe TS is a simply a different form of what I suffer from; the inability to to cope with vast amounts of contradictory data, and a lack of appropriate shut-out filters, resulting in an unhealthy (overly realistic) world view. In many cultures, people who couldn’t control what they said were killed or driven off, but in others they were encouraged to speak, and considered seers and oracles. Maybe it’s attempting to supress the speech, and repress what it reveals of the subconcious, that causes the tics? Just an idea, mind you…
Response:
David Bryant wrote: > Sometime parents are quicker to know. My mother suspected I had TS a > long time ago after reading an article in a magazine. Unfortunately the > magazine said that TS only affected Jews. Oh, the myths! Even though > my mother thought I had TS, she bought into the myth and it wasn’t until > January of this year that Mom and I figured out I had TS. > David > P.S. Mom also picked up that my brother had cystic fibrous long before > the doctors did. Of course, CF research has improved greatly since > then. Let us hope the same holds true for TS!
In one of Isaac Asimov’s books, he said that 47% (I believe that was the number) of persons diagnosed with Tourette Syndrome were eastern European Ashkenazic Jews. That’s quite a long way from all, especially since the good doctor diligently included the word "diagnosed". — //=========// Primary email mailto:Barti…@worldnet.att.net.spam /// Randall (Remove ".spam" when you reply) Bart /// Other email @geocities.com, @hotmail.com, @aol.com //=========// I’m Barticus everywhere
Response:
>In one of Isaac Asimov’s books, he said that 47% (I believe that was the >number) of persons diagnosed with Tourette Syndrome were eastern >European Ashkenazic Jews. That’s quite a long way from all, especially >since the good doctor diligently included the word "diagnosed".
This isn’t too surprising, if one considers the close knit family orientation that most practicing Jews usually have. The founding families of TSA were primarily Jewish. One of the largest studies on TS in a general population was conducted in Israel by the Jewish military. It’s natural that this misconception, about TS being predominantly "Jewish" phenomenon would have developed. The Jews first saw the problem, examined it, and did something about it for the sake of their kin, and ultimately, all of us. However, we now know that TS doesn’t "discriminate" as it were, against one or the other ethnic group, or religious affliliation. It would be helpful to know where the gene first occurred, since that might tell us something about WHY it occurred, from the evolutionary biological standpoint. However, we don’t as yet, know, and may never know. Unlike with cystic fibrosis (probably the Polish ghettos…confers resistance to tuberculosis) and sickle cell anemia (Eastern Mediterranean, Africa- confers resistance to malaria), for example. TS has now been found EVERYWHERE. KAT in CT
Response:
Randall Bart wrote:
In one of Isaac Asimov’s books, he said that 47% (I believe that was the >number) of persons diagnosed with Tourette Syndrome were eastern >European Ashkenazic Jews. That’s quite a long way from all, especially >since the good doctor diligently included the word "diagnosed".
***FYI from David Comings, Tourete Syndrom and Human Behavior: "For a number of years it was thought that TS might be more common in Jews, especially Ashkenazi Jews. This, however, was due to what we call ascertainment bias in that some studies were done in areas with a large Jewish population. In California, only about 10 percent of the population is Jewish and only 10 percent of our cases are Jewish. In Washington, D.C., 10 percent of the population is Jewish and 10 percent of TS cases were Jewish. In Texas only 1 percent of the population is Jewish and there, about 1 percent of TS individuals were Jewish. We have seen TS in blacks, Hispanics, Filipinos, Vietnamese, Chinese and Japanese. The frequency in different national and racial groups reflects the frequency of these individuals in the population. The intriguing question is whether these all are due to the same gene, or whether different genes are involved."
Response:
TS has now been found EVERYWHERE. KAT in CT Kat, I agree, TS is found everywhere. But, I’ve belonged to several TS support groups where the number of Jewish families is not within the proportions of the population. I personally have seen the numbers of Jewish families run at a much higher rate than that of the general population. Look at our own CT group (Fields, Sussman, Smith, Foster, Laura from Fairfield.) I would guess the percentage here in the Danbury chapter runs 30-40% with TS are Jewish. Perhaps the explanation is as simple as I might live in areas with higher Jewish populations, or I might live in areas where Jewish families seek out TS support groups. But, I hope that researchers do look into this phenonema since we are talking about genetics. Other diseases such as Tay- Sachs are predominately found in Eastern European Jewish desendants. But, Tay-Sachs can be found in many ethnic groups. Just thought to ponder….. I’m no expert on the subject, but us Mom’s at the support groups meetings begin to wonder when the number of Jewish children with TS runs so high in our support group. Regards, Diane in CT
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and I’m assuming that someone >posted info on the preliminary rage attack study that was conducted by >Budman, Bruun, and Park. If it wasn’t posted here, and anyone’s >interested, let me know, and I’ll describe what they found (it hasn’t >been formally published yet, but it was presented at a conference last >year). >Leslie
Wouldn’t hurt to do it again, Leslie. There are still some (not HERE, of course….) who believe that the study suggest that ONLY TS was required for these behaviors. My understanding was that it was the "trifecta", in Mark’s words, that were apparently required: TS, OCD, ADHD? Correct? Also, perhaps you can fill in some of the details for us: what methods were used to rule out environmental influences, i.e. school stress, etc., in this particular study as a possible contributor to these childrens’ problems? KAT in CT
Response:
Often I have read posts here about parents who take their kids to a dr to see *what is wrong with them* only to have the child not exibit any of the signs/symptoms that they do at home. I almost had this experience today dealing with new doctors at Yale for my TS son. He displayed a number of tics in the waiting room. Then he went tic free for two hours with the doctors. Luckily during the last few minutes of the appointment a few of the tics started to appear. It’s a frustrating experience as a mother. Regards, Diane in CT
Response:
Sometime parents are quicker to know. My mother suspected I had TS a long time ago after reading an article in a magazine. Unfortunately the magazine said that TS only affected Jews. Oh, the myths! Even though my mother thought I had TS, she bought into the myth and it wasn’t until January of this year that Mom and I figured out I had TS. David P.S. Mom also picked up that my brother had cystic fibrous long before the doctors did. Of course, CF research has improved greatly since then. Let us hope the same holds true for TS!
Response:
David Bryant wrote:
My mother suspected I had TS a long time ago after reading an article in a magazine. Unfortunately the magazine said that TS only affected Jews. **Tay-Sachs disease (also referred to as "TS") affects primarily, but not exclusively, Ashkenazi Jews. It is an invariably fatal genetic metabolic disorder and kills those who have it before the age of 5. Perhaps this is the source of the confusion.
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FranTewk, Mom said she easily could have had her terms mixed up. Thank you for an enlightning post! David
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> .
anyone have experience with doctors that don’t pick up on signs of TS? > thanks!
I think a better question may be "anyone had a doctor who WAS quick to pick up" A couple interesting statistics…. * the average age of onset of tics is 5 -7. * the average age of diagnosis is 11 -13. We desperately need to keep trying to get information out to the public!
Response:
My son was diagnosed early, only because of my frustration of trying to describe what I was seeing, and every time I brought my son in to the Pediatrician, he "didn’t see" what I was describing, primarily becuase my son wasn’t doing anything during our doctor visits, he was too pre-occupied with the visit to tic. In my frustration I videotaped a typical episode that I alone would often observe, not even other family members had even witnessed what I had been trying to describe. The videotaped was taken in and he was diagnosed, for all essential purposes, before we ever visited the Neurologist — based on the videotape.
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They (the doctors) don’t know because they’re not trained to know. They’re not trained to know because there is no big bucks in ts. I had a psychologist indicate that she could diagnose ts and then after a couple sessions (at $95 per) tell me that she couldn’t say i had ts unless she saw me tic ! I told her that i could sit in her office for an hour a week for years and she might not see me tic. Her ignorance of ts was glaring. Unless you feel that you’ve just got to have the drugs (there’s nothing wrong with that)stay away from these people. There’s more real help right here on ast. People with ts know about ts because to survive and function we’ve had to seek and find. Information and education are our "cure". Ronn
Response:
Information and education are our cure. This is what I have done for my children starting when my daughter was diagnosed at 8, and my son, only4 at the time picked up on all of it. It’s interesting though, after about 1 hour with the neurologist, taking a family history, listening to our "story" she diagnosed ts without blinking an eye. I feel lucky. She also didn’t push meds, and gave us a referral, which we didn’t use for almost 4 years to a psychiatrist. Nanci
Response:
i am 31 yrs old and have had facial twitches since as young as i can remember. i still do, and they really bother me. my eyes are always tired too, but i have trouble sleeping always. for the last ten years or so, i have felt just awful, barely eaking out my existence going to work and then coming home and staying until the next day. my father has twitches, and his mother did too…Parkinson’s too. i have seen psychologist and psychiatrist over the last seven years or so and never heard the suggestion of TS. i’m just curious though…they say the ticks could be just anxiety. my m.d. hasn’t said anything about it either. anyone have experience with doctors that don’t pick up on signs of TS? thanks!
Response:
Hi Toro. As I have mentioned many times on here, I am a psychologist, worked in the field very closely with psychiatrists for 7 of my 10 years in the field. There were many many times when it was I who asked the doctor to consider the TS diagnosis and s/he hadn’t a clue that it was an option until I mentioned it. In defense of the doctors remember that many of the most embarrassing tics can be supressed in public and the md seldom sees the real symptoms, only hears of them. Once s/he realized the possiblities, the meds flowed. There are others in the NG who have been frustrated by the claims that it was an anxiety disorder. You are not alone in your frustration with doctors. Stay with us in the NG and you will learn many new things and at least feel supported. Loreen – Hide quoted text — Show quoted text -toro…@aol.com (Toro101) wrote: >i am 31 yrs old and have had facial twitches since as young as i can >remember. i still do, and they really bother me. my eyes are always >tired too, but i have trouble sleeping always. for the last ten years or >so, i have felt just awful, barely eaking out my existence going to work >and then coming home and staying until the next day. my father has >twitches, and his mother did too…Parkinson’s too. i have seen >psychologist and psychiatrist over the last seven years or so and never >heard the suggestion of TS. i’m just curious though…they say the ticks >could be just anxiety. my m.d. hasn’t said anything about it either. >anyone have experience with doctors that don’t pick up on signs of TS? >thanks!
Response:
Hello again from Loreen, I can’t believe I forgot this vital tidbit. The difference between Tourettes and anxiety tics or motor tic disorders is that a vocal tic of some sort must be present for the TS diagnosis. If you are simply having physical twitches and tics, and do not have sniffing, sounds, throat clicking, or other vocal tics, you may be FORTUNATE enough to be coping with a tic disorder and not TS> – Hide quoted text — Show quoted text -toro…@aol.com (Toro101) wrote: >i am 31 yrs old and have had facial twitches since as young as i can >remember. i still do, and they really bother me. my eyes are always >tired too, but i have trouble sleeping always. for the last ten years or >so, i have felt just awful, barely eaking out my existence going to work >and then coming home and staying until the next day. my father has >twitches, and his mother did too…Parkinson’s too. i have seen >psychologist and psychiatrist over the last seven years or so and never >heard the suggestion of TS. i’m just curious though…they say the ticks >could be just anxiety. my m.d. hasn’t said anything about it either. >anyone have experience with doctors that don’t pick up on signs of TS? >thanks!
Response:
i’m just curious though…they say the ticks >could be just anxiety. my m.d. hasn’t said anything about it either. >anyone have experience with doctors that don’t pick up on signs of TS? >thanks!
Does a bear live in the woods? Oh boy, is THAT the 64,000 question. It only took ‘em 30 years in my case. .and then, because I read about it FIRST…sigh…. It’s possible you have a tic disorder. Not necessarily TS, although there isn’t much difference, frankly, between a chronic movement disorder and TS. You have a couple of choices: 1) forget about it 2) get some good literature on TS and take it as diplomatically as you can to your MD and tell him you think this might be what you have and see what he/she says, 3) get a new MD and hope he/she checks it out, 4) get a new MD and take HIM a good brochure and suggest you look into it together. #1 is not entirely frivolous…there are some diadvantages to have this in your medical file,…if you want a "formal DX." On the other hand, if you suggest to your MD that you’d like to know what she thinks, but not have it recorded, and she agrees….well…there you are. If you want meds, however, you’ll have to go the formal DX route. More questions? Ask away. KAT in CT
