I Take Pills So I Won't Dance || Familial Paroxysmal Kinesigenic Dyskinesia
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- Опубліковано 15 жов 2024
- I was born to dance. I have a movement disorder called Familial Paroxysmal Kinesigenic Dyskinesia. This is a real thing that I've had all my life.
I take medicine for it everyday. If I forget my pill then I lose control of my body. I'm a mutant and I want to find others like me. TO ME MY X-MEN!
My name is Seth-Prime Urbina. I'm an Oklahoman living in Cochabamba, Bolivia. If you want you can read about that here: sethurbina.wor...
Social Medias: @SethPrimeUrbina
Ahhhh.... so theres more of us out there. :) reading through all these comments made me feel a little better knowing that I'm not alone out there. To all you other x-men out there, be proud, be confident and onwards and upwards to success! I am optimistic and think there is a chance that there will be a cure for this one day. :)
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.
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
I also have this and hid it from everyone until I was 19. I also faced many difficulties and had a question that why me , what is it and I hid it, pretended to do some false thing at the moment when ever I got triggered. Yes problems will always be there but we have to find that good thing from each of them. We aren't alone. Hope there will be a remedy for this in future.
@@isumitd9586 I hid it from my own family who raised me. I remember feeling it on a lunch break in elementary school when all the girls started running and one said “why are you walking like that?” I think I said I don’t know and forgot about it. It took me a while to tell my dad and granny on day when I was 13 or 14 and they didn’t understand.
Got diagnosed today, feeling happy that I am not alone.
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.
I have it too.
Good to hear it from someone else's perspective, especially that part about hiding it for so long.
I have the same thing!! I started noticing it in elementary school and now I'm 22 and it is definitely not as frequent as it used to be. For me it has gotten to be mild as I've gotten older, I used to have them often and now it happens only a few times per month. I've noticed if I'm really stressed, start running, or stand up too quickly it happens. I've gotten good about lying about it and when i was younger i would randomly pretend to dance and now I'll pretend to tie my shoes or act like i have a leg cramp or something. I know my mom had the same thing but as she's gotten older, she doesn't have it anymore. I didn't know anyone else had it until today!
Allie I'm glad I could help you know there's more of us out there!
Thank you Seth-Prime Urbina, you gave me hope for a solution, possibly even a cure.
which medicine you had to get rid of this disease
Would it be weird if I ask you guys to get some kind of chat some day? Since this disease is really weird, I don't get to talk about it with any of my friends, at least not normally or fluently 😪
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!
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 too suffer from this. I had it for about 5-6 years before I was diagnosed. I had to go through secondary school (high school) with it, which was extremely hard. The worst thing was not knowing what the hell was wrong, and not being able to explain it to someone when they saw me have an attack (which happened a lot). I would bunk P.E (Physical education) because I was unable to do anything in that lesson.
I have two types of attacks:, one where it involves my arms, legs and facial movements (exactly like you mentioned in the video), and the other is where I collapse, like I'm being dragged to the ground by some invisible force and I cannot control my body's movement at all. These last a couple of seconds or so, but I've never actually timed it.
I have to take carbamazepine twice a day to do basic things like standing up without having an attack every single time.
I'm really happy to see that I'm not the only one with it (even though I know it's shit and I feel you bro).
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 ❤
The ol' shoelaces trick, I have this also, thanks for the video I can point people to.
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 UA-cam and I'm glad I'm not the only one, and I would like to talk with people like me, thanks :)
@@Augvsty sorry for the late response! I'll dm you
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
Oh Matisse! Don't miss them. Diseases are not good to have but having that spidey sense will help you always.
I love your positive outlook! And seriously your tattoo is awesome. My older brothers and I have it but it's so different from person to person. I'd say I'm on the more severe side yet luckily it doesn't affect my legs as much as my arms, face and torso. I'll try to hide my symptoms too! "I'm just going to stand here and pose, fighting off the symptoms... pretending to be normal." But hey! Mutant and proud! Even if it does ruin a lot of things. :)
I had this from around the age of 17 up until around 23. I never took any medication or anything it just went away one day. Hopefully yours will too!
did it fade away throughout the years or it just went away instantly?
Did you try some meds? and how did it fade away exactly?
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 💕
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!
Tash McKenzie you’re not alone I also come from a family with this disorder 💕
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 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.
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
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
I went through the same thing. The doctors kept on saying it was psychological. There are not test for PKD. Thank God for doctor Fishman at Maryland University hospital in Baltimore MD!! Hang in there and always remember God is goo!
Mine is also triggered in my left foot and causes that storm of energy all they way up to the left side of my face. I'm on medication now but that aura is always there.
I was just diagnosed yesterday and it happens on the left side of my body just like you described and makes my leg go stiff and my arm contract. I went to a neurologist because it was happening more frequently and it was freaking me out that it was only the left half of my body doing it. Has it ever happened on the right side of your body or anywhere else?
🙁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.
It wanted to happen today at Walmart. I had to leave the checkout line twice to get two different things. I Walked slower than I wanted to in order to not move extra strange. One item was damaged and the other I accidentally flung and it fell where no one could get it. Aggh. It’s so hard to walk under pressure and with no cart and so many people around.
my son has paroxysmal kinesigenic dyskinesia, he is 4 years old. He also has hypotonia
I having same problem and i am talking tegritol ...From. age of 14 till now 31 every single day... Can we talk someday?
I am also suffering from the same problem I.e pkd. Can you plz share your mobile number with me so that I can discuss more on pkd with you
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.
My son has the exact same mutation. He’s 9 months old now
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?
I experienced as a teen but didn’t get it til 30. Now that I’m near 40 it’s getting worse
I also use carbamazepine and tizanidine when I have attacks that break trough. Tizanidine is a fast working muscle relaxant. I also found out you cannot fight the spasms. It is better to roll with them. I also found that very bright light and loud music such as you experience in a concert.
Me and my siblings have the same thing . Carbamazepine works decent for us for the most part . It's definitely got better since we were kids. Mine is mostly on my left side of my body and left side of face . Whenever I'm stressed it goes haywire if I forgot to take a pill. 😩
My father outgrew it . I hope the same happens for me too
For how long did your father suffered and at what age did he get out of it Did he ever take any medicine How old is your father now
I also use carbamazepine and tizanidine when I have attacks that break trough. Tizanidine is a fast working muscle relaxant. I also found out you cannot fight the spasms. It is better to roll with them.
ya.
How many mg is your meds?
600
Thanks! I recently discovered i have PKD after years of not knowing. I had it since I was 7 and just recently turned 22 last week. I commend you for having the strength to post about it and raise awareness. Now that I am on 800mg of carbamazepine, i no longer have any attacks.
De'ellison Aych wow. i’m on 75mg of lamotragine
I also use carbamazepine and tizanidine when I have attacks that break trough. Tizanidine is a fast working muscle relaxant. It works in less than 5 minutes. I always carry around these with me. Carbamazepine is taken in a low dose 500 mg a day. It really has very little side effects. The carbamazepine has to be in your system all the time. I do notice I drop thigs more. Carbamazepine works by slowing the impulses from the brain and the muscles do they can get in sync and do not get the signals mixed up.
For me it as become less frequent.
BANTER FC really?? How long have you had it?
Mine was just pkd. it started when I was 15yr old I'm now 30. I was diagnosed when I was about 21. Then started on carbamazepine which complete stop it. It just seem to get a twinge in my left leg, that's with out taking carbamazepine.
what is the exact name of prescribed drug.
FIRST
My man!
Son demonios
LOL
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 can relate to your story. I was in my mid 30s when my symptoms began and it was a frustrating journey to diagnosis. Best of luck to you.
@@katiesarkozi6528 Best of luck to you. It is a crazy ride, but God is good all the time.
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.
LOL