MichaelTampa

Vickie, You could look it as uncontrolled thoughts and emotions just popping up, unrelated to what is going on in the person's experience. Perhaps it is a lot of uncontrolled thoughts that lead to emotions. Focusing over and over that someone did something last week that you really didn't like, and that may cause anger or depression or sadness or worry or whatever. Regardless, the experience ends up being one where thoughts and emotions are very out of control, and moodswings can be quick sometimes, and the person can be very stuck in a negative mood for a long time as the one thought/emotion is just repeating over and over. The person would likely be very irritable, anxious, nervous, short-tempered, edgy, depressed, short-tempered, easily flustered, and so on (stealing some of these words from Cheri from a different thread). That basically was my experience for many years, before I got a dental device similar to what dentists would use to treat TMJ. It realigns the jaw. I also had very severe sensory sensitivities--fluorescent lights, perfumes and other smells, and cellphones top of the list. All of these are on the common TS tic trigger list, and perhaps that is not a coincidence. Yes, and some occasional eye-blinking episodes typical of TS and miscellaneous muscle spasms (which would qualify as uncontrolled movements perhaps, but not quite the typical motor tics), and a few other things, like uncontrolled change in accent (mid-sentence, I start talking like I'm from New England or India) that I have heard categorized as a vocal tic. The dental device cuts down lots and lots on what is described above in the first paragraph. But, when I am exposed to the sensory sensitivities, all that comes back, along with nightmares, very loose and urgent stools and other digestive issues. So, you can look at this in a few ways. You can see the motor/vocal tics as limited but real, and say I have TS where the uncontrolled emotions and thoughts happen to be more of an issue than the motor/vocal tics (and perhaps for others it is reversed). Or, you can look at it as "Tourettic OCD" perhaps, or as a straight emotional disorder like anxiety with perhaps some multiple chemical sensitivity mixed in. Michael

Vickie--Yes, you nailed it, NSAID is exactly what it was. Cheri--I appreciate the heads up on steriods. My goodness, a year later! I'll proceed with caution and probably ask you more questions if the test indicates PANDAS. I really am guessing it will not, and I was more looking for a rule-out if you will. On a somehow related and somehow not-so-related topic, who knows what I really have or if I have TS. The diagnosis of TS I got last year has been enormously helpful in steering me in the right direction, and I am at least convinced there are neurological issues. But, the MD/psychiatrist I went to last night (who gave me prozac last year that more or less immediately caused a 4-month disability) in hopes of a letter to help with my ADA claim to get perfumes out of the restroom at work said she would look for a way to support that claim, but she totally did not see TS in me, not even a little bit. So today I directly asked my PhD psychologist what she thought, and she also does not agree with the TS diagnosis (she sees anxiety), not that she cares much one way or another, she just does what she can to help what she can, and admits she's not a TS expert. But, the TS versus anxiety difference is, I believe, huge, because emotional disorders are not going to be covered by ADA (which I have always thought just unfair, but that's the way things are now). My psychologist had not heard of "Tourettic OCD", but thought it made a lot of sense, but still would consider that an adjective, something you can have without TS. You have mentioned papers before about Tourettic OCD. What are your thoughts on Tourettic OCD, can it exist without TS? Also, not sure how much you have remembered my situation, but the reality is, I am a little bit out of place in the TS forum with so many symptoms being emotional and sensory sensitivity (fluorescent lights and perfumes and cell phones and so on), with just some spasms here and there and eye-blinking in the pure motor tic category. Meanwhile, last night the MD/psychiatrist points out the guy that diagnosed me has had 5 other patients he diagnosed as TS that she has seen and not believed the TS. That's going to sound to everyone like he overdoes it, but the other possibility is that she doesn't understand the TS very well. Perhaps a blood test showing PANDAS would be evidence of PANDAS instead of TS, rather than in addition to it, but who is to say really? I would think my experience with the dental device helping with emotions so much would clearly indicate a neurological issue, but I think that's as far as I'd go with that one.

Thanks everybody! I think I was on steriods once briefly (non-something something steriod), or maybe it was non-steriodal something-something, it was something that had a very long description. I was also on antibiotics once or twice. All of this was years ago and unfortunately I don't remember other details like if TS symptoms got better or worse. Michael

Reading the other posts of getting blood drawn in a doctor's office made me second-guess my plan for getting blood drawn. Can I just take it to LabOne or Qwest? Maybe they will require a doctor's prescription for the blood draw? Perhaps the Cunningham kit will not have that? Am I supposed to have one of my doctor's actually do the blood draw? Michael

I am an adult (age 42), diagnosed with Tourette's. As I continue to look for solutions, I want to consider PANDAS as a possibility for the cause. Dr. Cunningham says she will include me in the study, but points out that so far the study has just been children. I thought I ran across something on this forum yesterday talking about the relevance of getting treatment for PANDAS, it is never too late, as long it gets done before puberty, or something like that. Does anyone understand what is expected to happen to a child with PANDAS as they go through puberty and eventually become an adult? I know the P in PANDAS stands for pediatric, but still, people do get older, and yet I'm feeling I'm missing some obvious point. Can anyone help me, tell me what I'm not understanding? Michael

Goodness, I just ran across this e-mail. I sent Dr. Cunningham an e-mail last week saying I wanted to do the test, and have not heard back yet. Any suggestions? Could I be too late for this year already? I'm assuming first step is blood draw, but I would need instructions to give to whoever will do the draw, and of course it's nice to know if she is able to do the test before getting the blood drawn... Michael

I'm an adult with TS. My symptoms are more emotional, sensory sensitivity, and the more traditional uncontrolled movements are more like spasms than tics that really move body parts noticeably. That said, I have tried taurine a number of times, and my body has already reacted negatively. It has kept me up all night and made my head feel "weird" and overall made me feel generally "just not right". I always have my supplements energy tested to make sure my body really needs them and will react well. Even so, I have reacted badly to taurine in this way, and also to tryptophan (coincidentally or now, another amino acid). Very interesting. Michael

My situation with the device continues to be relatively stable. I am still more calm with the device. By the way, it has never been like the device means nothing can bother me. Besides regular stressing situations that can happen in day-to-day life that bother most people, the fluorescent lights and perfumes act as triggers and I will go crazy, even with the device. It seems pretty clear what it is helping me with and what it is not helping me with. It is not helping with any of the spasms either. What happens without the device is constant anxiety and worry, and wearing the device stops that from being created unless there is something else going on (particular social stressor, fluorescent lights, perfumes, ...). I continue to go to the pain clinic I described in the above e-mails, but, for a variety of reasons, it has only been every other week so far, so, I have only been 3 times total so far. It is going to take a lot longer to see how much it helps. I am using the crazy straw some, really have not noticed anything. My vision is improved lately, and my guess is it relates to adjustments they made at the pain clinic during my second visit. I am also looking into the oxygen therapy I mentioned in a previous e-mail, but nothing has happened yet in that regard. Michael

My experience matches exactly what Cheri describes. Actually, that is why I prefer to look at TS as uncontrolled movements, vocalizations, thoughts, and emotions; rather than just TS as uncontrolled movements and vocalizations and, oh, by the way, the person happens to have OCD as well. I think that first view more accurately reflects the experience (well, I know it does for me), and you end up with all those symptoms she describes.

As part of looking for an MD who handles multiple chemical sensitivity, I ran across a website (www.mcsrr.org, for those interested) talking about many who look like they have MCS actually have what they call MUSES (multiple sensory sensitivity). They believe MUSES is caused by carbon monoxide poisoning. The site lists a number of conditions which, if you have too many, indicate it makes sense to pursue the MUSES possibility. Besides a potluck of conditions, the list includes a number of neurological based ones--autism, epilepsy, parkinson's, alzheimer's, and ADD or ADHD--but not Tourette's. I asked them about it, and he was not aware of a connection there, but when I pointed out that TS trigger lists often include perfumes and lights, and we talk about chemical sensitivities and sensory integration dysfunction quite a bit, he was more intrigued and asked if I might toss out this survey. The question is, how many of the list below, do you have reduced tolerance to. The "you", of course, is the TS patient you are on this board for. - odors - lights - sounds - tastes - touch - heat or cold (count as 1 if true for one or both) - drugs or alcohol (count as 1 if true for one or both) He thought that CO poisoning was more likely to be the cause for answers of 5, 6, or 7, but MCS was more likely to be the cause for answers of 1, 2, or 3. If we have a lot of 5/6/7 answers here, that would make him want to study the general link between TS and CO poisoning more, which is why he asked if I would do a survey looking for anecdotal evidence first. I'll start the survey off with giving my answer, which is 6.

Generally the nature type CD's and tapes are really bad ideas for me. I was in a bit of a traumatic incident a few years ago (okay, 3rd anniversary is this Friday, but who's counting), nature and water and waves were involved, and I nearly drowned. I keep working on getting over that, but still, at this point, those kind of CD's won't be good for me. I tried something similar to the subliminal stuff you mention, Mary, a couple years ago. It is Holosync. They make CD's for meditation where mostly what you hear is rain but there are other sounds that put your mind into a state of meditation, if you can stay awake. They also make more typical subliminal CD's too. But I would way too often become conscious or wake up in a state where my breathing had stopped and stuggle to breathe, kind of like sleep apnea, but I have since been diagnosed with inflamation with esophagus, and it appears now to be somewhat related to that.

Just as a follow-up, I tried a couple more days, and did not in the end lead to getting more sleep or feeling more rested in the morning--perhaps a bit the opposite overall. So, this experiement is over and is going down on the ideas that didn't work for me.

Reading some of the information from the Handle Institute website (recommended by FixIt in the Dr. Sims thread), for those with trouble sleeping, they recommend having something else in the room that makes noise, whether it is a dehumidifier or music. The idea is to have something constant to get used to, so your brain is less bothered by other sounds that come up, like the refrigerator going on and off. With the recent increase in perfumes in the men's restroom at work, I am having violent nightmares regularly, and also trouble staying asleep. (Fluorescent lights do the same thing to me, by the way, just bizarre stuff.) After last night started out the same, or perhaps worse, then recent nights, a lot of nightmares and a lot of waking up, I moved to the couch in the living room where I could put some light music on, fairly low volume, just enough to hear. It was gentle peaceful music without singing, but from songs that are normally performed with words. (Channel 820 on DirecTV, for anyone really interested, called "Escape".) I still did wake up frequently, so it really didn't help with that, but I don't think I had any nightmares with the music on. I will try again for at least a couple/few more nights, perhaps a little louder volume. But, was curious, if anyone else had tried anything like this. Michael

Fixit, Thanks for all the thoughts and ideas, a lot to think about. I had not heard of the Handle Institute, did look at their site a little bit. I will be starting a separate thread regarding their sleep recommendations. I'll be looking to get a crazy straw and hopefully that will help with the light sensitivity, as they suggest. The tapping exercises, although they gave quite a bit of detail, probably are something I will still need quite a bit of help with from one of my doctors on understanding the locations, as I'm not that knowledgable regarding the anatomy, and some of those locations are just hard to describe with words. Michael

Just took a look at the TSA website and gave them a call. They actually have information and professional referral service for ADA and many other situations. We'll see, but it really looks like if they will, at a minimum, be able to refer me to a lawyer that will be a lot better than hunting and pecking through random ADA lawyers.

Chemar -- I had not thought about the TSA and MCS angles. Do you by chance know if MCS is covered by ADA? Was it some legal thing at school that required the accomodation, or just the MCS diagnosis scared them enough to be nice? We do have a few integrative doctors in town, and, though I have never had a reason to seek it out, would be shocked if getting a MCS diagnosis would be very difficult in my case. Faith -- I work for a large international company, and the official ADA stuff is actually handled by someone in an entirely different city. So, I think even if it gets messy and costly and everything, it really won't matter at all to co-workers or management here where I work. More than anything, it will be just difficult for me to focus on actually working and keep all the negative feelings about the company in general from affecting my attitude toward work. Actually my boss was against a previous accomodation I requested, but, he said, if it was approved, he would be okay with it, and he absolutely has been fine. The restroom on my floor is really the last one to not get the perfume. It's difficult to piece together, but I believe they were really installed everywhere last year. I flamed the facilities people in an e-mail so bad at the time, I am sure my boss heard about my flame. I went out on disability about a week later (the perfume very likely contributed, but there were certainly other factors). When I returned 4 months later, it was gone from our floor only, and never a word about it, until recently, it was added to our restroom. When I complained, the human resources area seemed confused why it was all of a sudden a problem, and truly believed they had been there all along. They insist it is important "for obvious reasons, for the comfort of all employees", and asserted at the time that someone having "just allergies" would not cause them to remove it. I really would be surprised if any of the other employees who use the restroom care about the perfume one way or the other, so am not worried about their reaction to it being removed when that finally happens, if they were to find out I had anything to do about it. But, I do believe all that would be kept quite confidential.

I know many on this board are here as parents, and not as much as patients, but, I'll take a stab here just in case. I have extreme sensitivities to perfumes, and my company recently added a perfume machine to the men's restroom. They like to call them deodorizers, but the reality is, they do nothing to remove odor, they only add the odor the room. In any event, I asked for it to be removed, and my request was denied. I figured I would just file another ADA request with the medical director / lawyer person who is employed by the company and accepts/rejects any ADA reqeusts for accomodation. I have had a couple such requests already approved related to my TS and fluorescent lights, and figured this was a slam dunk case, although very frustrated that they made me go through the trouble and delay of the process. I was very surprised to see he eventually rejected the request, and has more or less closed the communication channel by refusing to answer any questions regarding why, other than stating that he does not see "enough compelling evidence" to accept it. Before he made his decision, he did ask for me to tell him which chemical in the product was causing the problem, so they could put a perfume in there without that specific chemical. I did explain that it is perfumes in general, it is sensory, not a particular chemical, I have just as much problems with the "natural" citrus based ones, for example. I have tried an attempt to see if my boss can change management's mind regarding before going to a lawyer. (Management can honor my request regardless of the ADA medical director/lawyer, just like management can do so many things, it's just that if their ADA medical director/lawyer says they have to, then the definitely will.) These are the same people I asked initially, but now it is my boss instead. He initially got a "no" as well, but that they would think about it. It looks to me like it is basically time for me to go to a lawyer specializing in handling these cases, and hopefully one exists. My basic question to anyone out here is, do you have any experience with any situation like this that would lead you to make any suggestions, in terms of how to find a good lawyer for this, or any other aspect of how to handle it? As I explained to my boss a couple days ago, as part of asking him what he could do, if there was any other way, there is just something crazy about all the time and distraction and money that is about to be spent regarding a *$%^@! perfume sprayer in one restroom, and the potential for a legal hearing or trial or whatever, like this perfume is that important to them, but, it does look like here we are. Michael

Beth, Yes, I continue to use the appliance I got from Dr. Sims. Things are pretty steady compared to what it did for me initially. It has helped with emotions and general calm, but there are triggers, fluorescent lights particularly, that really flare things up that I was hoping it would help with, and it has not. My mouth is finally adjusted to wearing the device without creating sores that are too bad, and none that hurt. My jaw is really adjusted to the new location, which makes chewing without the device more difficult, but I can't chew with the device without getting massive sores. I went to Dr. Garcia hoping he could adjust it in a way to make it do more for me, and I still consider that a possibility. All he wanted to do is sell me his appliances, because he says they are better. For now, I am just wearing the device as is, and going to the St. John-Clark Pain Treatment Center in Clearwater where we are working to align the rest of my bones, including the spine, because there are plenty of nerves, including the optical nerve, that could be affected by that. At the moment, this realignment of other bones is where I place the greatest hope of getting my issues resolved. After things are aligned there, they believe I will need a lesser adjustment of my jaw from the appliance, and that is another reason for me to hold off making it permanent through orthodontics. At the end of my first (and, at this time, only) appointment with Dr. Garcia, they were talking about next steps would be to hook up to this electrical device that would measure all kinds of things going on in my head and jaw area. I was presuming that would be to help make the device adjust the jaw properly. Could it be just for fun? Is that all the X-rays are for too? Just frustrated with all the tests, and not hearing the information being used. Sounds like that electrical testing device was not even used with your son initially? Michael

Laurena -- It is a great thought, but I just want to caution Michele (or anyone) to be REALLY careful and not assume too much. I went to Dr. Sims to get mine, and Dr. Sims told me what a great situation it was that he could refer me to Dr. Garcia for local follow-ups and adjustments and so on, because we are both in Tampa, and Dr. Sims thought so highly of Dr. Garcia, being a former student of Dr. Garcia. When I went in for that, all he wants to do is sell me his, because he believes his are better (which they may be, that's a whole other issue). I have not yet managed to ask the direct question of whether he is willing and able to do adjustments with the device I have, but I have this bad feeling the answer is he will not be able to. The devices are really very different in terms of what would be needed for adjustments. So, yes, a good idea, but, be careful. The one from Dr. Garcia you wear forever during sleep is made differently than the daytime one, and it would not surprise me to hear that this does not need adjustments very frequently, if ever (for an adult). For a child, goodness, that's a whole other issue, these bones are still growing and I wonder if they have to be remade after a while. Beth -- I wonder if you could fill us in on how Dr. Garcia determined the adjustments. Dr. Sims and Garcia both take plenty of X-rays, so I expect they are using this to align the jaw forward and sideways in a proper manner, aside from determining the upward/downward adjustment. I know Dr. Garcia has all this fancy electrode stuff or whatever it is, but, did he actually use that for the adjustment? The whole thing is a little mysterious, and I found it impossible to get an explanation from Dr. Sims on how he made the determination, which I assumed meant he was using a good bit of judgment, it wasn't that "prescise" or "scientific" or "objective" as a patient might hope, at least as he was doing it. Dr. Sims did do a little muscle testing on me, and it did show stronger for 9mm than any other adjustment, but it may have been because I had practically begged him to allow me to bring in an energy tester to help make the determination (I had lined someone up, but he did not permit it). Michael

love_nfp, I am wanting to chime in with my two cents. Dr. Garcia is not a TS specialist, he is a TMJ specialist. If you're interested in pursuing this type of treatment, you should consider if there is a local TMJ specialist that would be more convenient for you. Maybe Dr. Garcia is just far and away better at this stuff than other TMJ specialists, but I wouldn't just assume that. I do know that Dr. Sims and Dr. Garcia do have a high opinion of Dr. Garcia. When I met with Dr. Garcia, he gave me some paper showing how his device was tested as better than some other type of device during sleep, so, that is something to consider. I was impressed with Dr. Garcia, although to be fair, he is the only TMJ specialist I have met, so, it's not much of a comparison going on. It is a hard question to answer, but that I think is one thing you want to think about. The other is, you want to realize that with whoever you go with, there are going to be ongoing checkups and adjustments that are needed, and you need to pick someone that you are going to be able to do that with. Michael

abbe, I used NAET a lot about 3-4-5 years ago. I was allergic to everything. Okay, there might have been like 5 foods I was not allergic to. It did help a lot, however it is not stuck forever. I know they promise permanent relief, but let's face it, the allergy or whatever you want to call it, it started somehow. What if the same conditions that created it are still there? Can't it still be created again? It lasted about a couple years I would say, then I had this big health meltdown for a lot of reasons, and they're all back. By the way, I have a terrible problem with fluorescent lights, and tried that treatment with NAET a number of ways, with no success. It showed bad, then it showed cleared, but no difference in the end. I think any body would develop an allergy to something that caused such problems to it, but that doesn't mean the allergy is the root of the cause. I have gone from alternative doctor to alternative doctor to alternative doctor, probably tried 25-30 things by now for these lights, with no success so far. For me, the NAET did get unwieldy too. After treating individual foods, things were a lot better, but it was the food combinations that needed treating too. I literally was treated for spaghett with spaghetti sauce, home-made from tomato paste, onions, and dried oregano. I ate it a few times, it was fine, no problems. Then I made it with dried basil instead of dried oregano. And I had terrible acid stomach. At some point, you can't do everything. Fortunately, most people don't need the combinations treated like that. I am actually thinking of going back, the foods I need to avoid at this time, with these allergies and candida make it really hard to get adequate nutrition. But I am trying to hold out until the root cause is found and treated. I have a different acupuncturist now, and she has done different energy treatments that have helped with foods, but not quite as good as NAET, and it hasn't lasted as long, either because NAET is more permanent, or my body is still more of a mess than it was before. Best of luck, and I will be eager to hear how it goes, particularly regarding fluorescent lights. They are killing me, and if anybody has any success with even a vaguely similar problem, I absolutely want to hear more. Michael

On the topic of shakes for getting high-calorie foods, how about using nuts and water as a substitute for milk. You are still going to need a sweetener, but I think fruit or agave nectar or whatever combination could work for that just fine. I find raw cashews that have been soaked for 15 minutes to an hour to be excellent for blending. Back when I was allowed sweet things and sugars (b.c.--before candida, if you will), I would make this cashew french toast batter like that, adding cinnamon too. Now I am making a not that sweet at all milk to cook oatmeal in, which I find tolerable, but wouldn't suggest trying to give to a kid without sweetener or sweet fruit or something. I'm sure the roasted cashews could be used, but I don't think they are quite that creamy, and they're not going to soak so well. Coconut oil along with cashews in a smoothy would probably be delicious with any sweet fruit--bananas, strawberries (unless they're not that good, then would need sweetener), dates, and so on. Actually, there are plenty of fake milks out there, like almond milk, which I used to use but it has sweetener I can't handle now, and soy milk, which I know causes problems for lots of people. Michael

love_nfp--That type of testing is something a number of my healthcare providers do or have done. My acupuncturist does it all the time to manage all my supplements. She doesn't tap, she touches and ask if it is good for me, how much per day, and so on, and it mostly works. The proof is in, when I do what she says, it helps, when I try going off the things she says I still need, I feel weaker, when I try things she later tests as bad, I have problems. It's not 100%, but pretty reliable. It's less reliable with drugs, and the harder questions your chiro was asking. Like, I was just having side effects, and she was asking separately for each drug, was it causing this side effect, was it causing that side effect. She concluded it was mostly the one drug, omeprazole. But, the proof is, each time I increase dose of the carafate (has aluminum), they all get worse, when I decrease, the symptoms decrease. Time and again. I think this testing does have limits, and your chiro was right around those lines from my experience. But, then, probably each provider has different skills and each patient can be different in some way that affects how well that works. (For those remembering my earlier comments on this thread, I'm going back to my statement that carafate is clearly worsening my TS symptoms--even while wearing the Sims mouthpiece. It's always possible it's any of the various ingredients, but I can't help focusing in on the aluminum as the reason.) Faith--An emotional/psychological therapist (EFT etc.) I am no longer going to mentioned it to me a couple/few months ago, as really addressing structural issues that can cause things to go off, said she was very impressed with the exactness of the work. She was a patient (may still be, don't know). It was just before this thread began, and I was drawn more to the idea that I knew that it was my jaw that was off, and going to Dr. Sims to fix that. This local clinic lists TMJ as something they will treat, so, as I was looking at TS as a version of TMJ, it seemed a good place, but not the quick-fix like I was hoping for Dr. Sims. That's the appeal of the jaw work, getting a splint is quick-fix, if it works, great, you know quickly (helped me great with some things, not others at all). Paul St. John absolutely believes the Dr. Sims trigeminal nerve stuff can cause TS symptoms. As he brought his other TS patient in the room and the 3 of us were talking, it got quickly to that topic, and he brought out this book and looked for a picture to show this other patient about this nerve. I did manage to pull out from my backpack the picture Dr. Sims hands out, just before he found the right page, but, of course, they were the same picture--this was the book Dr. Sims got the picture from (I believe it is a very popular book, my acupuncturist has it as well). From what he said, my impression is that Paul St. John believes the Dr. Sims device can be helpful for some, but he probably sees his own work as primary, as he says I may need less of a jaw adjustment, or maybe not one at all, when he is through with me. His approach seems to be to fix the legs, which affects the hips and spinal cord and head bones, and then see what you need from the jaw. He also said, by now, I've had a good bit of teeth wear from the misalignment and grinding and so on, to some extent, the adjustment would likely be needed just to offset that. Regarding the nerve I was calling the optical nerve in my previous post, my impression is that this is a different nerve from anything Dr. Sims was thinking he would affect with the jaw adjustment. The trigeminal is big, and really important and all that, but there are many more smaller ones, and this optical one goes through a really tiny hole. If anything is off a little in the skull area, that can be pinched as well. I didn't directly ask Paul St. John if this optical nerve could be fixed by jaw adjustment. I guess anything's possible, but I doubt it. Leg length can affect so much because it can affect spine, and spine can affect so much in the brain. But, I don't think too much relies on jaw placement, similar to, maybe moving your hand around isn't going to affect too much in your feet. But then, moving your hand can affect shoulder muscles, so, who knows, maybe moving jaw has a bit of an affect on things nearby but not directly in line of fire. (I'm just guessing here, really, we did not discuss, but it just looks like it's a different place to me.) They are licensed as LMT and CINT. LMT is for massage (they do deep tissue work to help the bones go back to where they belong). CINT, don't know exactly, but think NT is for neuromuscular therapy. They are not chiropractors it seems, but are trying to put your bones back in the right place (as chiros try to do). I can't compare it to cranial-sacral, because I don't know exactly what that is, and haven't had any massage type treatments yet, just got the implant yesterday, next time they will probably do work, but it won't necessarily be in the head area, we will see. All this leg length testing, what you describe is what Paul St. John describes as the typical chiro way of doing it which is completely useless. I've had it myself years ago. First of all, all he's done is pulled and prodded and pushed, and by the time your son makes it back to the car (or jumps up and down once or twice), he'll be right back where he was (as far as leg length related adjustments). That's the good news, he's doing no harm. That positioning has developed over years, from walking with improper length legs (if he has that), and if he sends your son away with the same length legs, he hasn't made much of a lasting impression. But, the bigger point here is that these leg lengths cannot be determined by quick inspection. Paul St. John spent about 15 minutes carefully measuring where different left and right bones were in position to each other. For example, bottom of left knee is higher/lower than bottom of right knee. Left shoulder is higher/lower than right shoulder. And so on. From this, the average bear would conclude that it looks like my right leg was longer by 5 mm. Then, he spent 20 minutes teaching me how to stand for the X-ray he was sending me to get. This positioned things where the legs would truly reveal their length. It turned out from the X-ray the right leg was shorter by 5 mm. How does this happen? The pelvic and hip area bone (don't know the fancy word for that is very much 3-dimensional and rotate in any kind of variety of ways to distort where the leg bones end up. Chiros typically get X-rays at the top of this area, so they don't see the distortion. This place I went to gets the X-rays at the bottom of this area, to really see about the legs. In my case, this would have resulted in a different conclusion by 10 mm (1 full centimeter). Forgot to mention, I also discussed my hiatal hernia with Paul St. John. I have had it for years and years, but it was officially diagnosed with an endoscopy about a month ago. He considers these as tears of a muscle (I assume diaphragm muscle), they will not repair without surgery, not that anybody recommends that, there are a lot of sensitive nerves in the area, and that surgery often provides poor results. But, he did say, again, it's a structural issue, with leg bones and pelvis and spine out of place, things get pushed in the wrong way and cause this. He says these adjustments he is doing will at least prevent any further tearing. Just want to point this out, we talk a good bit about digestive issues and do our best to deal with them, I hear they are extremely common with TS, but not much discussion on what is causing that. My acupuncturist was a little leery of the adjustment, and then it tested (her muscle testing) as good for me, so she is happy, but still was trying to tone down expectations. Reality is almost all of us have something off at least a little bit. Mine was probably more than a little bit, but still, I guess making me realize still it doesn't mean it will be the answer, but it is nice to try and we will see. We were joking, I just keep getting extras for my body. A shoe implant now, and I already have glasses and a hat (both for fluorescent lights) and a special watch around my ankle (resonates Schumann frequency, same as earth frequency, strengthens chakras, emotionally grounding). Looks like next up should be some fancy belt! As an aside, or not, I have had headaches almost nonstop since getting this shoe implant. Hoping it is good news that we are fixing things, and that it will STOP SOON! But we will see. It could also be related to my carafate (with aluminum), and I am going to do my best to figure that out today. I can always stop the drug temporarily and see what happens. Michael

Thanks, I gave that NUCCA a look, and I will try to keep that in mind if the route I am currently going doesn't work out.

Goodness, just when I wanted to use an emoticon for the very first time, I can't find one I like. Don't we have one for, "hey, wow, I have something I want to share that I'm quite excited about"? Anyway... As I had mentioned, I wanted to consider a local pain clinic approach before going to Dr. Garcia to get another splint and hope it was better enough to be worthwhile. The place I went to is St. John-Clark Pain Treatment Center in Clearwater, Florida. They might be roughly described as doing adjustments to your bone but not the way chiropractors do it. They use deep tissue work to adjust bone placement. In some cases, such as mine, they will determine that there is an issue related to mismatch of length of leg bones. For example, your right leg can be shorter than your left leg. If this is true, they get you a prescription for something to implant in your shoe (cost me $22 each in shoe repair shop). This length mismatch can cause the spine to bend like scoliosis, and eventually the nerves going into your head, and the bones in your head, are out of place, in order to compensate. The bones need to do this so you can balance, but this obviously can cause problems. Fixing the leg length allows the bones to straighten out, with the help of the deep tissue work. I hear from the person who referred me that it is possible to get homework exercises, but my therapist there has not mentioned that. I was just there yesterday for the first time, and I'm sure we'll get more into next steps later on, first he'll want to see next week how much my bones have adjusted on their own. It turns out that I got to meet another patient this same therapist has been treating successfully. He has been treated there for TS, apparently with good success. Not comfortable telling more of his story on this board, as it is his story. I will be e-mailing him my e-mail address and about this board, so hopefully he will come aboard and show more. As an aside, for me, it was the first time I got to really meet another person with TS. They have a lot of 3-dimension aids of bone structures, like fake skulls and whatnot, so I could actually understand what he was talking about. The thing that excited me the most was the prospect of getting the light sensitivity fixed. He showed that moving the jaw with the dental device doesn't really impact the optical nerves and where they could get pinches, which is normally what causes that symptom. Seems like there is a good chance this adjustment will lead to fixing that. He believes I will end up needing less of an adjustment on the jaw, as compared to what I have with the current device from Dr. Sims, and maybe just maybe not one at all (I'm not quite that hopeful about not needing the jaw adjustment at all!). That was what I bemoaned most of from Dr. Sims and Dr. Garcia, wishing they could talk in terms of which symptom is caused by what type of problem or location, rather than, well, we'll just try and move the jaw somewhere and hope it works. Of the two dentists, I do think Dr. Garcia has more experience doing these adjustments, and is more sophisticated in measuring where to make the adjustment, just as part of being a TMJ specialist. My plan is hold off on any new device, see what improvement I can get from this place adjusting other bones in the rest of my body, and then go from there. At least, then, if I still feel I need a new device, I'll be more set in terms of deciding on how much of a jaw adjustment. This place really is different than chiropractors. They have a very special way to do an X-ray regarding leg bone length, different and more precise than chiropractors. Without fixing this, chiropractors may do their best to keep straightening things out, but in a way, they are treating symptoms of mismatched bone length, and the treatment will just not stay. Faith--I know you are going to a chiropractor and experiencing an uptick on the tics, if you will. Is that still how it is going, or have things changed? My two cents, for what it's worth, I do thing there's a good chance there is a structural issue for your son, and his reaction to the treatments is because of that. A lot of treatments, even good ones, will exacerbate symptoms for a while. My acupuncturist has told me this frequently. The only question, if it is the right way and helping, or not. Full disclosure--I have been to two different chiropractors over the years for my headaches and light sensitivity, and have never been helped by it, and they just kept doing the same thing time after time. What they tried was different, but that was how it went with each one. If you start really seeing good results, that's great, but if not, or just curious, I'd definitely suggest going to someone trained by this place I went to. If you have a local one, it's at least not too expensive like the Dr. Sims big investment in the beginning. Here, the investment is something like $22 per pair of footwear (if leg length is a problem), plus probably an X-ray, and an initial office visit. Then, it is a charge for each visit, and you keep going as long as it's helpful. For anyone interested, this place I went to has about 5 therapists. Mine is Paul St. John, the founder of the place. He has trained various people across the country, and they are happy to take calls and refer you to a local person who he has trained (if your area has such a person). Michael