Can't suppress tics=not Tourettes (is that true?)

I was told that tics in Tourette's syndrome can always be suppressed. So if you can't suppress it, it is not Tourette's. I was also told that you must feel the urge to do the tic, if you don't feel an urge it's not Tourette's. And finally that all tics are performed by the individual themselves to prevent or reduce anxiety/ psychological distress. So if you are not doing as just described, then it is not Tourette's.

Do you agree with this? Is this what your Tourette's is like?

Example of someone who fits the above description:
John is talking with friends. John feels anxiety. He feels he needs to kick his leg out and make a barking sound. He does not do this for 5 minutes and feels increasing anxiety/ psychological distress. John doesn't want to feel the extreme anxiety/psychological distress anymore, so he kicks his leg out and makes a barking sound. John feels the anxiety/ psychological distress is greatly reduced now. This happens 20 more times that day.

Does it sound like John has Tourette's syndrome? If not, then what do you think it was?

Example of someone who does not fit the above description:
Ben is talking with friends. He is not feeling anxiety. Ben suddenly finds that his leg kicks out uncontrollably and he makes a barking sound. Ben doesn't understand why that just happened. This happens 20 more times that day.

Does it sound like Ben has Tourette's syndrome? If not, then what do you think it was?

I ask this because I have what Ben has. But I have been told it can't be Tourette's because I can't suppress it and it happens without me having to move my own leg or actually do the barking myself. I just find myself barking and think 'wtf!' and can't stop it. I've been told by a different doctor that I possibly do have Tourette's. So now I'm confused. Please answer my questions because it will help me out. I want to hear what you think.

Feel free to reply everyone.

I have tourettes syndrome. And my tics consist of mostly upper-body movements and random sounds. Most of the time I know when I am about to tic and I can sometimes stop them from happening. But when I went to a neurologist to see what was going on he wasn't sure it was tourettes because I could feel them and could stop them, he was thinking I had a form of epilepsy. Which there is a form of epilepsy that is often misdiagnosed as tourettes because they both involve the involuntary movement and a random uncontrollable sound. My neurologist sent me for an MRI where they found nothing in my brain claiming to either tourettes or epilepsy, which meant it was deeper in my brain.

I have found that I tic more frequently when I am really bored, or stressed out about something. Or if I am around my dad when he comes home from work, a chemical that he uses often triggers a tic attack for me. I have found that keeping myself busy, so I do not allow my brain to slow down and get bored that I do not tic all that much, unless I'm stressed out. So I try to stay stress-free, which is often easier said than done. I also have ADHD, OCD, and a little bit of bipolar that sometimes go hand-in-hand with tourette's disorder. However, I was diagnosed after the age of 18 and it seems that some people outgrow their tics, mine just hit me worse when I got older.

As for the Ben and John cases to me, both sound like cases of tourettes. Just because you do not feel a tic coming on does not mean that you do not have it. Nor does being able to suppress them. When I was first diagnosed I could feel them coming but could not prevent them, now I've figured out tricks that prevent them, but they come back 10 times worse later that day, so in my opinion it is not good to hold them in, it can hurt, or at least it does for me.

Hope this helps

Thanks for the great reply cn790.

When you said your neurologist sent you for MRI scan and considered epilepsy, it made me realise the person I saw did not try very hard to understand my condition at all. I think I should see a better doctor now. And I was also told that you can't get it worse after 18, but the neurologist you saw didn't seem to think that. I wonder if the doctor I saw just made up everything he said.

Anotherperson wrote:Thanks for the great reply cn790.

When you said your neurologist sent you for MRI scan and considered epilepsy, it made me realise the person I saw did not try very hard to understand my condition at all. I think I should see a better doctor now. And I was also told that you can't get it worse after 18, but the neurologist you saw didn't seem to think that. I wonder if the doctor I saw just made up everything he said.

It's possible. Or maybe you saw a doctor who wasn't too knowledgeable on the matter of tourettes. The first person to actually diagnose me was my brother's pediatric neurologist, my brother has had epilepsy since he was 4 months old. She saw me tic in her office and recommended the neurologist I went too. My mom also done a ton of research on what I was doing before I went in so we could really talk to the doctor and know how to really explain what was going on. I recommend finding another doctor to diagnose you, and ask for an MRI, or an EEG, it can't hurt to know what is going on inside your brain. They examined my brain and the part of my spine that connects to my brain, so I guess my neck area. I will say a horrible process, the MRI SUCKED, and that is an understatement. I was in the tube for 2 hours, and I was out the rest of the day, so it was a wonderful nap. lol.

I have actually had it all my life, but I never noticed it until I watched a documentary with my parents on kids with tourettes and then my parents slowly realized that as a kid I had it, and thought about it even more after I was diagnosed. But it was mild growing up, they just thought I was dancing, and acting silly, and I thought it was cold-chills. So I misdiagnosed myself. But it got worse after 18, it did surprise my doctor, but he said it does happen, its rare but it happens. So we're special I'm 22 now and I believe I've been diagnosed for maybe three years now? I recommend some research and then see a new neurologist, and tell him/her what you've looked into, what people have told you that have it, feel free to use my story, and ask for an MRI just to see what is going on. Now they may not find anything but they could.

Hello Anotherperson,

Hope the following will help answer your question:

I was diagnosed with Tourettes at the age of around 7, I am now 22. I find that I get an urge and i can indeed suppress the tic, however I don't see there being much point in doing that as it only aggravates the situation, makes me more riled up and in doing so creates the need to produce more tics.

I suppose everyones reaction to having Tourettes is different, but in my experience I always know when I am about to produce a tic, opposed to it just happening uncontrollably out of no where. I do feel that the opposite is a huge misconception about the disorder held by practitioners just reading their books, but as I say, everyone is different so perhaps it is wrong of me to have that view?

Anyway, I hope this helps you on your search for answers.

Aidy