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My littlest daughter was just diagnosed with it at three years old ❤️‍🩹 we've been dealing with the seizures since right before she turned 1 years old, and I've had to fight with doctors a lot because they kept saying it was febrile when I knew it was not!!!! Diagnosed about 2 and 1/2 years after her first seizure. When we took her off of the seizure medication 18 months after her last seizure, that's when the tremors (although I like your dancing term better) started.

I used to not like entering the stage to dance hula. I watched a video from many years ago. I noticed it was bothering me. I was taking extra slow steps, secretly frightened about moving weird before starting to dance. I was dancing in front of my aunties restaurant.

my son has paroxysmal kinesigenic dyskinesia, he is 4 years old. He also has hypotonia

Dude! I recently was diagnosed and came across your video. It’s SO nice to find someone else that knows what I’m dealing with, it’s so hard to explain to people and it sounds so made-up. Unless you have it, you won’t really understand it. Mine is triggered by overexertion, the first time it happened to me I was mowing the lawn. Thank god I fell forward instead of backwards, because really don’t want to wind up with this condition AND no legs. For me, when it happens, I freeze up and plank in whatever position I happened to be in when it hit, and fall down almost in slow motion, and once I hit the ground, I convulse for anywhere from 5-30ish seconds. So, I guess I’m a breakdancing mutant, lol. I’m working on the medication part, because it makes me so exhausted I can’t function for a full day after a dose. Anyways, I’m always down to talk more about this with others, I was starting to think I would never come across anyone who understood it. Thanks for speaking up ❤

You’re such an encouragement! We just received a PRRT2 mutation diagnosis for my THREE YEAR OLD SON. TeamXmen! …So he started having full blown tonic/clonic grand mal seizures at 5 months old, but I had suspected infantile spasm type of movements for a while. The seizures seemed random, and they were brutal. They kept prescribing more keppra but it just wasn’t helping. His second neurologist we took him to, which was at age 18 months, prescribed Zonisamide - which worked immediately. This neurologist finally humored us with genetic testing a couple months ago, and last month we finally learned the results. We had never heard of this genetic mutation. It’s so wonderfully encouraging to see a smart, eloquent young man speaking from firsthand experience. Thank you for sharing! You are like Wolverine to my son!

🙁I have this and refuse to go to the doctor for fear of limiting my job options.😢 It happens mostly in my toes and feet and calves mostly and maybe a little in my thighs.. but only when I’m walking. It’s when I change pace. When I first start walking like after checking out at a store, or finish talking at a reception desk or get up, but only when people are around or I am being watched by a security guard or maybe someone at the reception desk. I feel my toes wanting to curl under and press into the ground instead of simply walking. I walk fine once I get started and have perfect balance and strength. I notice when I push a shopping cart, I don’t seem to have it and am not afraid to trigger it. I’m not sure why the cart helps. I feel the muscles in the back of my legs flexing and just doing the opposite of whatever walking requires and I slow down for it to settle down and try to relax.

Did you ever grow out of this? I had this for like 15 years and never spoke about it. And fought it and ignored it. My daughter has the gene too

Hello, im 15 years old and I am from Denmark. I got diagnosed last year and my brother has it too. My "episodes" are centered on my rigt side and are pretty mild. I also try to hide it, but since it effects my left eyebrow a lot, it is difficult. Your video and the comments has helped me a lot. I didn't know it could go away, but I really hope so, cause i dream of becoming a surgeon one day. Best of luck to you all.

My son has a PRRT2 gene mutation. He has infantile benign epilepsy. I’m wondering if you had seizures when you were under 2? PKD is something he might develop eventually. I have migraines related to that same gene mutation. Thank you for sharing your experience.

This is really real. Watching this video has me bawling as I am a father of 3 and have been dealing with it since an adolescent. More visible and harder to hide now that I’m older. I thought it was something I did to myself during the foolish college years but now I know it’s genetic. Don’t know who in my family has it. Tried the med you’re on and it wasn’t for me. Just moved back to my home state near family searching for a new neurologist and others like me. Hopefully they fix us with a new software update lol. Thanks for this video. Stay up, stay positive, stay dancing brother.

I experienced as a teen but didn’t get it til 30. Now that I’m near 40 it’s getting worse

I having same problem and i am talking tegritol ...From. age of 14 till now 31 every single day... Can we talk someday?

hi seth, my name is Matisse and i’m 17, living in South Australia. i’ve had familial paroxysmal kinesigenic dyskinesia for as long as i can remember. my brother and my dad have it too. my brother and i are on medication which stops our symptoms. i’m pretty forgetful so i miss them sometimes though. feels good knowing there’s a lot more people like me out there. :) good luck to you all

Got diagnosed today, feeling happy that I am not alone.

Your video made me cry and laugh thank you so much because you helped me feel not a alone for once in my life #borntodance 💕

I have PKD as a symptom of Multiple Sclerosis. It's very rare. I've also had Rheumatic Fever and Sydenham's Chore in the past, so when the PKD began I knew what Chorea was. But this time, the movements last a few seconds or minutes. I'd have over 100 episodes a day. Plus, all kinds of seizures. I had the flu- then the PKD started, it's been nearly a year now/ I also have ballism- where my arms and legs just fling around wildly. And Parkinsonian symptoms too. Really glad the meds work for you. It's a tiring and miserable condition (not to mention embarrassing!) Just wondering, have you ever had strep throat? Because strep can affect the Basal Ganglia- which is the area of the brain that is supposed to cause PKD.

I have just recently been diagnosed with PKD but have had it since I was 9 and it’s so soo good and comforting to know that I’m not the only one after hiding this for so long and feeling like something was wrong with me. Thanks for this video

Hey Seth thank you for sharing your video, there are 5 people in my family with pkd (its genetic) including my two daughters. Its really tough to explain to people because if affects them both so differently. I can see you posted this a couple of years ago, I hope you're close to outgrowing it!

Thank you so much for your video. I got it when I was in my 40s, which is very rare. Doctors thought it was psychological or caused by stress for three years. I finally was sent to a doctor who has someone at his office who had dystonia and he sent me to see a doctor in Baltimore. I finally was prescribed Carbamazepine which gave me back my life. I also use Tizanidine as a backup to stop the spasms. I am very active and even can still run with my wife.

I just realized I have it today, I mean I've been having it since i was 14, anyway I have to admit I was kinda depressed then I researched on TH-cam and I'm glad I'm not the only one, and I would like to talk with people like me, thanks :)

Wow you made it

Nice!!!!

This is soo funny!!!! I was here the night ya'll filmed this!!! Thank you for all the smiles ya'll gave us and our friends.

Your dedication wow...

Hey dude! I have the same movement disorder as you, made a video on it after watching yours! th-cam.com/video/_NU8WsltURE/w-d-xo.html

Dope! First one to view 😃😃😃😃😃

I've got the same thing man! th-cam.com/video/_NU8WsltURE/w-d-xo.html

Hey bro, I need to contact you please! is there anyway to contact?! like email or whatsapp or whatever. Please reply ASAP, thank you♥️

His grace endures forever!

Was diagnosed with paroxysmal kinesigenic choreda (I'm assuming similar if not exactly the same) at the age of 19 but began having symptoms around the same age as you did. They were triggered in a very similar manner (mine were from anticipation of a voluntary action) This was around the early-mid 90s. Neurologists had a hard time diagnosing it, to the point they thought I was crazy and sent me for psych review (multiple lol, although I'm still convinced I'm mental, just not the way they imagined). In any event, one specialist eventually saw my file after numerous EEGs, CT, and MRIs and said.. you have pkc/pkd. Probably one of the best days of my life believe it or not. Was prescribed Tegretol (carbamazépine or however it's spelt). After a few months on the pills I started reducing my dosage on my own as I hated the side effects from the meds. It turned out my condition began to improve over the course of the next couple of years to the point where the condition practically never occurs any longer. Still get Auras in very isolated conditions to this day (I'm now 39) but they are now able to be controlled (sorta diverted I guess) before becoming a full blown episode, which I can't even remember the last time I had one (years ago). While my case might not have been a textbook example, my experience shows it diminished with age and didn't always need to be controlled with meds, at least long term. I don't drive for obvious reasons, but it's the only handicap from the condition that still affects my daily life. If only there was as much info (and people like you) on the Internet back then, things would have been possibly quite different coping. Back then people had no idea why I randomly needed to tie my shoe ;) Best of luck and thanks for sharing your experience

omg i was there...

I been aight

Ghost pepper or the one hot chip challenge thing.

Top notch millennial content.

Darn robot indeed

God bless Box Face

i wish the whole thing was poop emoji

Yo Seth!! What's up?! Haha

I just started experiencing this at the age of 24. Its such a humbling experience to lose control of your own muscles. I have become so much more appreciative of how fragile we are, and how controlling your own limbs is a privilege that can be taken away from you without warning.

Nice

First

Baby

The "it's late and I can't be loud" subgenre is back. Remember the video from Zena's?

Oh man I wish you still put the music in. But also when you're quietly do the instrumental parts to stay on time it's really funny.

first

The lack of commitment was kinda disappointing, but overall a good job. 7/10.

Second

first

My dog has a movement disorder You remind me of him. That's a good thing =) He's adorable. And he can't pronounce any big words, lol. Iwondered what you had to say about it so that I could better understand what he goes through.He seems scared when it's happening and he used to throw up, I think because he was so scared but who knows. Perhaps whatever is making him sick to his stomach is triggering the movementepisode as well. It's hard to say. His neurologist suggested kepra would be the safest med for this, Ever tried it?

This is easily the best one.