My Tourettes Story - Shayn

[Shauly10101]

What happens when u hold it in?

[slash17d]

It's kus your a Jew.

[phoen1xvine]

I have MS (multiple sclerosis) and I have a movement disorder but it is not tourettes although they say it is very simalair because we have tics also. I was diagnosed in 2003. You are very brave in recording these videos!

[flobunny1]

I have Tourettes too.

[shaynapulley]

@flobunny1 just keep ticcin' :)

[momowoop]

I lives with tics all my life, since i was a young girl. I hate how people judge but i've learnd to control. Now all i suffer with is a twitch and a minor noise :)

[TheNakedWombat]

Good to see you cope with your TS. I personally keep my membership with Toastmasters to manage my TS.

[purpleloover]

btw im 16 now.... and ive just realized the word "tic"... which explains my odd behaviors when i wa younger.. may i just ask how you were diagnosed.. llike did the dotors run test.. like MRI's.. or EEG;s... etc... and btw when you found out you had tics.... do you do it more often or when people nad you to stop or when you are aware... would you do it more?

[shaynapulley]

@purpleloover Actually when I let people know upfront about my tics I don't feel as strong of a need to tic, but then if I'm relaxed and comfortable I start ticcing alot because I'm not paying attention to hold them in. I've had a ton of blood work done, genetic testing, neurological exams, physical and occupational therapy, MRI's, xrays, pee samples, had a QEEG awhile ago, and going to an EEG as soon as I find the time.

[purpleloover]

@shaynapulley

ohh why so many test?....

[shaynapulley]

@purpleloover to rule out more serious diseases like brain tumors, Wilson's disease, multiple sclerosis, etc.

[purpleloover]

@shaynapulley

ohh ok. i thought doctors doubt your tics.. thats hurtful

[shaynapulley]

@purpleloover originally they did, and I saw a lot of psychologists/psychiatrists and they all referred me to a neurologist who then referred me to a Tourette specialist. It was scary because even I believed that the tics would go away in a matter of weeks, but it has now been over 2 years and I just take things in stride now. they're a part of me and my life and they don't stop me from living! :)

[Largestina]

How long did you have tics for when you were diagnosed? Or are you self diagnosed?

[shaynapulley]

@Largestina I was officially diagnosed in January of last year at a movement disorders clinic by a team of neurologists. Before that I was observed by numerous psychologists, psychiatrists, nurses, physican assistants, my own doctor, and a general neurologist for a little over a year with the initial observation being r/o conversion disorder, multiple complex and simple vocal and motor tics (heavy on the vocal), and lastly Tourette Syndrome as my condition had not improved in over a year.

[MadameTicsALot17]

When I tell people that my first tic happened at 16, then people doubt when I tell them I have Tourette syndrome. People are only now starting to know what Tourette syndrome is thanks to True Life and god forbid South Park, and almost all of the people featured on those TV shows had symptoms at 8 maybe younger. I got sick of people saying I don't have this condition I looked up how common TS is in late adolescence, it came to less then 10%, very rare, mostly genetic almost less then 2% sporadic

[shaynapulley]

@MadameTicsALot17 do you know where you got those statistics from? i'd like to see them, very interested.

[taleana2002]

@MadameTicsALot17 i was 17yrs old when i started ticcin. I learned thought i had mastered suppression, but it seems i am wrong...im 32yrs old now and the tics are back like before, but more...so even know i have to go through that feeling of friends have to get to know this part of me, that i thought was gone. Odd thing, this TS, eh

[kdheithaus]

How brave to share! You are definitely getting something wonderfully positive from something that could have brought you down! Thank you for sharing :)

[shaynapulley]

@kdheithaus thank you for watching!

[tinknpeterstreasures]

bayna!  Mrs. M here! - saw comment on FB --- This wasn't a result of karate was it?

[shaynapulley]

@tinknpeterstreasures No not at all! I just lost the genetic crapshoot with this one.

[idranktheseawater]

How long did it take you to figure out that it was tourettes?

[shaynapulley]

@idranktheseawater It took over a year, we had to go through the process of ruling out everything from conversion disorder to Wilson's disease.

By the time I was diagnosed, I had seen three psychiatrists, numerous counselors/psychologists, a family doctor, and two neurologists (not counting the extra neurologists that would observe me and my neuro during regular appointments).

It was also coupled with the fact that I have a second neurological disorder, which complicated things.

[amphibdriver1]

Shayn,

Very inspirational story. God bless you.

[shaynapulley]

Thank you :)

[twitchyjeff]

great video shayna, isthistourettes taught you well (: looking forward to seeing more!

[brianjeppesen]

I'm glad you did. It helps others to see someone with the same thing. Keep the videos coming! We'll love you for it. :)

[brianjeppesen]

Amazing video!  Thanks for having the courage to post this.

[freakzunited2]

You're an inspiration!

[IsThisTourettes]

Awesome video!!!!!!!!!