Question:
MCartwrite wrote:
There is also a 45 minute film aimed at educators with ideas for teaching the child with TS/TS+. So if the teacher is looking for ideas and is going to take the video home to watch it, the educators film would be better. But for a general presentation at school, the former. IMO Vicki H. do you know the title of the 45 min. tape? erin is on a campus of 1,000…huge for her. the counselor said she has had "one" ts child in the past.
Which we know is not very likely to be true <grin
… she just didn’t
recognize the rest. That’s why I wish there really *was* a video (or something) about "a regular kid" with TS — the "regular" one put out by the TSA shows moderate to severe TS, and not much mild, so wouldn’t help this kind of teacher detect all the TS she may be missing … even though it may help for one particular child. my two cents … BB2 i would like to buy a tape for counselor/team – Hide quoted text — Show quoted text -
teachers to view because they know little or nothing about ts/ocd. thanks, again. mary
Response:
"random C." wrote:
<many snips
I told my best friend about my sudden research into TS after months (or years?) of "banging my head against a brick wall" as I "walked in circles" trying to find out what’s wrong. (please excuse my puns but that’s really how it feels when doctors don’t listen!)
Tell me about it! I think it is an epidemic. Doctors often don’t listen, or just hear through their own bias. HMO rules and overcrowded scheduling hurts too. But there are some exceptional doctors too who take the time to listen to all of your concerns.
After describing a very distrubing episode one day, I even had one doctor say, "Well, does it hurt?" I replied "no" and he said, "well, then it’s nothing to worry about." Yeah, right.
I’ve been told either that I am just too sensitive, that I am too nervous (hah! rarely…), or that all my neurological ills are due to my marital status. And those are just the memorable ones. I’d like to make each of them tic, even one simple but strong tic, for a solid day and then see what they say.
Anyway, to comment on your above suggestion, it just so happens that I work at UCLA in Narcolepsy research with the above-mentioned friend. She gave me 4 or 5 doctors I can contact who specialize in movement disorders there. But there’s no guarantee they can help me…
But they might help too. Hang in there! I wasn’t diagnosed until 38. My tics were quite heavy and constant for at least 2 years before that, occasionally heavy in the years before that, and I’ve had TS since I was about 5, I believe. Five neurologists, 2 internists, and an endocrinologist could not see the TS. One of the neurologists had the wisdom to send me to a motor disorder specialist. The specialist recognized the tics as tics right away. I was diagnosed with ‘Multiple Motor Tics." After two more visits, TS was diagnosed.
Most of my tics are simple hand movements, etc. that make me look like I’m nervous about something. But they can always be "paused" to, say, push the elevator button or make a left-hand turn. I can also talk normal sentences in the middle of rambling nonsense–with some stuttering and difficulty, of course. But I can do it.
I think assuming tics are "nervous tics" is common. I wasn’t diagnosed then, but I wasn’t put in the group to skip 3rd grade because they thought I was "nervous." I’ve been on stage many times since, leading question and answer sessions and giving lectures, and directed many plays professionally, one with a cast of almost 100. I can get nervous, but few would describe me as a "nervous" personality. I’m sure that early judgement came because I was ticcing. Most important is learning not to worry about what your tics make you look like. That will make the tics less uncomfortable for you. It takes time, but it will come. As for the ability to speak normally or push a button in the middle of a tic stream, that happens to me too. I think it is a brief form of that hyper focus, which in this case that lets you suppress long enough to spit a sentence out when you are otherwise ticcing heavily.
The same is true for Cataplexy. It can be suppressed, but only for a certain length of time before the inevitable fall happens. Sometimes, instead of fully suppressing it, I simply focus and relocate it into an arm or a leg I’m not using. That usually gets rid of enough "build-up" until I’m in a situation where I can really let it go. I learned that from the dogs I work with that have Narcolepsy–letting it out little bits at a time helps keep the big attacks at bay. The ability to suppress doesn’t mean that tics are voluntary, but does help distinguish them from other motor phenomena, such as spasms. Well, I may have these, too. They overlap so much, it’s hard to tell.
I think seeing the best motor disorder specialist you can will help you greatly with that. You might also want to get a referrence from TSDA, in Redlands, CA. Theresa Mesa, a not frequent enough poster here : ), is on the Board of Directors. Their website is http://www.tourettesyndrome.org You can find information about medications used to treat TS at that site too.
I’ve read that TS is caused by too much Dopamine.
Or too active dopamine receptors…..
Narcolepsy is though to be due to a lack of Dopamine or damage to Dopamine receptors. New research has seen evidence of neuronal degeneration in the amygdala pathways, some of which control the brain stem, which sends the signal to sleep or not sleep, move or be paralyzed because you’re dreaming now. In Narcolepsy, the damage causes the "you’re dreaming" signals to be sent during waking, causing Cataplexy. At least, that’s the most recent theory. The Narcolepsy gene has also just been found in the dogs. My friend and I wonder if there is any relationship between that gene adn the TS gene. I’d like to do a survey on the [N] list to see how many people have Tourrette-like tics. Very interesting…
There are horses with TS, and I think I’ve read dogs can have it as well. Some of the PET scan studies now being started on people with TS use markers that were developed by running PET scans on baboons. I don’t know if tics were induced in the baboons, or if baboons also can have TS. (And as an aside, wondering how they would distinquish tics from obsessions in baboons in those studies? Ask them what they are obsessing about?) Just a thought, though. Since Narcolepsy is a lack of dopamine or damage to receptors, are any of your meds dopamine agonists? This type of medicine could be causing the tics you report. You have a very good handle on the difference between tics and seizures and spasms. Some doctors unfortunately equate too much knowledge with a psychiatric problem. Keep probing. There ARE good doctors out there. Armed with what you know, you and the motor specialist should be able to come up with some answers out of the maze of your symptoms. It may take several sessions with that doctor to sort out what is going on in you. It won’t be easy, probably, but perhaps it will get easier. Keep asking questions! Ellen
Response:
Ellen <el…@worldnet.att.net
wrote: I think seeing the best motor disorder specialist you can will help you greatly with that. You might also want to get a referrence from TSDA, in Redlands, CA. Theresa Mesa, a not frequent enough poster here : ), is on the Board of Directors. Their website is http://www.tourettesyndrome.org You can find information about medications used to treat TS at that site too.
I *saw* that! LOL! I’m blushing! Lessee…I started school–taking a creative writing class. Oooo, I love it! Husband has been reeeaaaallllyyy sick with a strain of the Australian flu for the last 5 days. He never gets sick. I was pretty sick for a bit. Working on conference stuff. See separate post about that. There’s always the autistic/TS son and the 16yo NT daughter. Eeeesh. My kitchen is in the middle of being remodeled. My house is a shambles–ask Leslie! …Which is why I haven’t been posting much. Plus, I’m getting ready to file a complaint about a neurologist I recently saw because of walking and other problems, who wrote me off in her report as a hypochondriac (in not so many words) *before* she got the results of the tests that she ordered–tests that showed that my muscles are moderately severely atrophying (did I mention I have a great big garden that I work in–we live on 1/6 of an acre–and my regular doctor says the atrophying is definitely not due to disuse), and that I am experiencing some moderate intellectual/cognitive decline, and that my motor function on my right side is so bad as to be considered impaired, and that a urologist was able to determine I *am* having incontinence…but it’s all in my head, you know, and I’m just looking for attention. Yes, I’m bitter. I asked Colleen if it was typical medical practice for a doctor to write up a report on a patient *before* s/he received the results of tests that *s/he* ordered! She said, ummmm….no. And speaking of movement specialists, my appointment at this facility was supposed to be with a movement disorders specialist. I didn’t find out til I got there that they didn’t have a movement disorders specialist anymore, so I got this doctor. I should have walked out of the office the minute I found out. As soon as I get a copy of the neuropsych’s report, I’m filing the complaint. Apparently, movement/motor disorder specialists are few and far between. Theresa So, I’ve been busy… 
Theresa — (Fibroflares are not conducive to great typing!)
Response:
On 17 Aug 1999 16:30:20 GMT, mcartwr…@aol.com (MCartwrite) wrote:
There is also a 45 minute film aimed at educators with ideas for teaching the child with TS/TS+. So if the teacher is looking for ideas and is going to take the video home to watch it, the educators film would be better. But for a general presentation at school, the former. IMO Vicki H. do you know the title of the 45 min. tape? erin is on a campus of 1,000…huge for her. the counselor said she has had "one" ts child in the past. i would like to buy a tape for counselor/team teachers to view because they know little or nothing about ts/ocd. thanks, again. mary
Actually, tapes must be running together in my head <g
. The one you
want IS ‘A Regular Kid, That’s Me’. It is 44 minutes long. (I think I was mixing the title up in my brain with ‘Stop It! I Can’t', the old video.) Vicki H.
Response:
Ellen wrote:
Just a thought, though. Since Narcolepsy is a lack of dopamine or damage to receptors, are any of your meds dopamine agonists? This type of medicine could be causing the tics you report.
I was on Ritalin, a metabolized form of Amphetamines, which stimulates the central nervous system–often used for ADHD. That was to stay awake, but I stopped taking it a year ago. My sleepiness got somewhat better–enough that I don’t need medication. I also take Vivactil, which is an antidepressant that suppresses REM sleep and has anticholinergic effects, since Narcoleptic brains are sensitive to choline or acetalcholine (sp?) which causes Cataplexy. But the down side of that is that the rest of the body needs choline for things like muscle movement, digestion, etc., so it gives me bladder problems. People with Myesthenia Gravis (sp?) take the opposite–medication to stop the re-uptake of choline so they can move their muscles (the disease demyelinates the neurons in muscles that control movement). This gives many patients stomach problems. I’ve had the tics since before taking any medication and the Vivactil has actually helped treat some of it when I go on higher doses. Go figure. Kristi
Response:
TSA has a 30 minute video called "Tourette Syndrome: A Guide to Diagnosis". It is specifically aimed at doctors, but the video actually shows a variety of movement disorders and talks about the differential diagnosis. The video might prove helpful to both the poster and her doctor. Vicki H.
vicki, iyo…what would be your choice for a video to show teachers. thanks, mary
Response:
*****WARNING! This is a long post!!***** Ellen wrote:
The first thing I would suggest, if you haven’t done so already, is to see a neurologist who specifically treats people with motor disorders, and works with motor disorders only….Your current neurologist may be able to refer you to a specialist, or you might find one in a major medical research and educational center.
I told my best friend about my sudden research into TS after months (or years?) of "banging my head against a brick wall" as I "walked in circles" trying to find out what’s wrong. (please excuse my puns but that’s really how it feels when doctors don’t listen!) After describing a very distrubing episode one day, I even had one doctor say, "Well, does it hurt?" I replied "no" and he said, "well, then it’s nothing to worry about." Yeah, right. Anyway, to comment on your above suggestion, it just so happens that I work at UCLA in Narcolepsy research with the above-mentioned friend. She gave me 4 or 5 doctors I can contact who specialize in movement disorders there. But there’s no guarantee they can help me…
Other people here might be able to recommend specialists in other parts of the country. As a person with TS, I would say that those movements and sounds you’ve described sound like tics only when you have a sense of having to do them beforehand. This is called a premonitory urge, and can come in an instant before the move or sound is made. Another test of a tic might be your ability to suppress that move or sound, if only for a moment. If you cannot suppress them at all, they might not be tics.
I can almost always sense it coming and almost always suppress them. My friend recently developed idiopathic dystonia. Her movements seemed similar to mine and yet she can’t control them *at all*. Mine can become quite paralysing (either rigid or not) but I think if I tried I could find a moment of control in all episodes, even the really bad ones. She agrees and cited several instances of her observations that verified this. She even said to me one day while in a rigid dystonic state that she envied my ability to control what she couldn’t. Most of my tics are simple hand movements, etc. that make me look like I’m nervous about something. But they can always be "paused" to, say, push the elevator button or make a left-hand turn. I can also talk normal sentences in the middle of rambling nonsense–with some stuttering and difficulty, of course. But I can do it. I have it on tape–my last fight with my ex-boyfriend. He was covering my mouth and saying "shhhh" trying to make me stop. I was recording it for future exhibits to doctors (I wished it was a video camera instead, but anyway…) and he just wanted to go to sleep. Let me rephrase that: he wanted me to go to bed and shut up so he could get some sleep before work the next morning. Nice guy, eh? I broke up with him that night. I realized that his lack of compassion for something I couldn’t control was something I just couldn’t live with. He was also semi-abusive when I had Cataplectic attacks (temporary paralysis of voluntary muscles due to an emotional trigger). He’d heavily tap my face and make me feel very vunerable or he’d pinch or bite me to "break me out of it". It rarely worked, but every episode was an adventure in "saving my life" to him. It got to the point where he wouldn’t stop when I requested it so I had to settle for "please just do it in places where the bruises won’t show." I didn’t get it then, but I do now. I did that night. anyway, I digress…
Having said that, suppressing tics is a temporary thing, eventually the movements or sounds will come out, sometimes in a stronger way than if you hadn’t suppressed them.
The same is true for Cataplexy. It can be suppressed, but only for a certain length of time before the inevitable fall happens. Sometimes, instead of fully suppressing it, I simply focus and relocate it into an arm or a leg I’m not using. That usually gets rid of enough "build-up" until I’m in a situation where I can really let it go. I learned that from the dogs I work with that have Narcolepsy–letting it out little bits at a time helps keep the big attacks at bay.
The ability to suppress doesn’t mean that tics are voluntary, but does help distinguish them from other motor phenomena, such as spasms.
Well, I may have these, too. They overlap so much, it’s hard to tell.
An urge to tic is sometimes compared to having an itch. You have the urge to scratch it and you must scratch it.
Like when I get this sudden feeling I need to tell someone something really important but I don’t know what it is and I start rambling desparate unitelligable syllables or start squealing an "eeee" sound and can’t stop until I get it all out. boy, that really annoyed John!
(devilish grin) A movement that isn’t a tic lacks that urge, like when a person shivers because he is cold. There is no urge to shiver, the body just does it in response to the stimulus of being cold.
Like my friend’s dystonia. Rigid arm, rigid jaw, can’t help it or stop it and it goes on for hours. No feeling of "need" to do it, just wishing it would stop because it hurts.
A few other things you mention could be TS. One is that when you are very strongly absorbed in something, the movements and sounds disappear.
I think this is why the "water trick" works. Concentrating on moving my body to go to the bathroom can become very engrossing when you have Cataplexy, too.
Another thing you mention is some obsessive/compulsive behavior, which seems to be a part of TS, like reading everything compulsively. Hitting yourself can also be a tic, or it can be classified as a compulsion too. There is sometimes a very fine line between the two that is difficult to describe. However, I don’t think it is typical of TS to have the tics only on one side.
It’s not typical to have Cataplexy on one side, either, but it happens. I know several people who experience it. But there are also quite a few people on the Narcolepsy support group e-mail list that have similar movement symptoms that I do–even the vocal ones. They’ve all told me to let them know if I ever find out what it is. I’ve read that TS is caused by too much Dopamine. Narcolepsy is though to be due to a lack of Dopamine or damage to Dopamine receptors. New research has seen evidence of neuronal degeneration in the amygdala pathways, some of which control the brain stem, which sends the signal to sleep or not sleep, move or be paralyzed because you’re dreaming now. In Narcolepsy, the damage causes the "you’re dreaming" signals to be sent during waking, causing Cataplexy. At least, that’s the most recent theory. The Narcolepsy gene has also just been found in the dogs. My friend and I wonder if there is any relationship between that gene adn the TS gene. I’d like to do a survey on the [N] list to see how many people have Tourrette-like tics. Very interesting…
Other things can cause tics or tourettism, like medications, thyroid imbalance, or Wilson’s disease ( a disorder of copper metabolism, in which copper accumulates in the liver and released into the rest of the body.) Blood tests can rule out thyroid disorders and Wilson’s disease. If you haven’t had these, ask your doctor to do them as soon as possible.
I will look into those, too. My mother has thyroid problems, so it’s possible.
Some people who have posted here have talked about having other neurological conditions in addition to their TS, like migraines or benign essential tremor, but the existence of a relationship between them and TS isn’t clear. Some things you’ve mentioned, like dragging your foot and loss of muscle tone in your leg, rigidity, facial grimacing on one side only, or chronic hiccupping, don’t sound like the typical phenomena of TS itself. Rage hasn’t been proven to be part of simple TS, (nor disproven conclusively) though many people have mentioned that problem. That may have more to do with your fatigue, frustration, depression, and/or your medication. Klonopin, for one, can cause extreme mood swings and disinhibition.
But these things have happened before Klonopin, Ritalin, or Vivactil. Many of my symptoms also fit simple partial seizures, but EEG’s show no sign of any. And how do you distinguish a seizure resulting in smelling blueberry muffins from a Hypnagogic Hallucination of blueberry muffins baking in the oven? It’s very hard to distinguish what’s Narcolepsy, what’s simple fatigue, and what’s anything else. As I said, they all overlap each other. Thanks for all your help here. I’ve gained so much wonderful information in the past 24 hours from all of you. I’m so excited that I finally have new avenues to explore after almost giving up (again) and simply resigning to "just coping with it" and trying to find a doctor that would at least prescribe some medication. BTW, what are all the medications used to treat TS? I’ve read that some suppress Dopamine, which would be a bad idea for me, but Klonopin works just fine for me (eventhough it does cause a little drowsiness). I got the impression this is not a typical TS treatment, but Klonopin isn’t a typical Cataplexy treatment, either (antidepressants are), and yet it helps my friend immensly. Can’t say the same for me, though. I guess everyone just different. The funny thing is, TS has always been mentioned by countless doctors as a possibility but then always immediately thrown out. "Look for TS or seizures" is the typical response–guess which one wins? Guess who always loses? But then I realized that’s how it was before I knew about Narcolepsy. It was always suggested but I didn’t know a thing about it and it was always immediately thrown out as a possibility. I suddenly got the urge last night to actually learn about TS–I knew *nothing* … read more »
Response:
On 16 Aug 1999 22:51:03 GMT, mcartwr…@aol.com (MCartwrite) wrote:
vicki, iyo…what would be your choice for a video to show teachers. thanks, mary
It depends on the purpose and the amount of time available. ‘A Regular Kid, That’s Me’ is short and aimed at a general audience – can be shown to classes. There is also a 45 minute film aimed at educators with ideas for teaching the child with TS/TS+. So if the teacher is looking for ideas and is going to take the video home to watch it, the educators film would be better. But for a general presentation at school, the former. IMO Vicki H.
Response:
There is also a 45 minute film aimed at educators with ideas for teaching the child with TS/TS+. So if the teacher is looking for ideas and is going to take the video home to watch it, the educators film would be better. But for a general presentation at school, the former. IMO Vicki H.
do you know the title of the 45 min. tape? erin is on a campus of 1,000…huge for her. the counselor said she has had "one" ts child in the past. i would like to buy a tape for counselor/team teachers to view because they know little or nothing about ts/ocd. thanks, again. mary
Response:
Good suggestions, Ellen. Another thought (especially if she has trouble finding a specialist in movement disorders nearby) – national TSA has a 30 minute video called "Tourette Syndrome: A Guide to Diagnosis". It is specifically aimed at doctors, but the video actually shows a variety of movement disorders and talks about the differential diagnosis. The video might prove helpful to both the poster and her doctor. Vicki H.
Response:
Dear Kristi
Categories: Thyroid Imbalance | 
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. Please do some thinking first. Here is how I recommend getting started. First, make a promise to yourself that you will honestly look at the information you get. Plenty of time to argue with it later, for now just read it as something to consider. Start with my breeding ethics page http://www.dog-play.com/ethics.html You are certainly free to ignore my philosophy of responsible breeding. I do ask you to at least take a look at the breeder resources I offer. Purchase one or two of the books. Read them twice through, at least. Educate yourself to the point where you can decide what kind of breeder you will be. After you do your research you will, at the very least, be making your decision with knowledge. The right to exercise choice means very little in the absence of such knowledge. There really is a lot more to responsible, caring breeding than it first appears. I urge you to investigate further before your heart is committed. Diane Blackman – – – – – – – – "The nature of reinforcement and its timing and delivery are essential for a dog trainer to master." "Smart Trainers — Brilliant Dogs" by Janet Lewis 