I've been having the same problem since I was 9 years old. It happens to me only on the left side of my body. It isn't painful and severe as shown in the video... Also, is PKD a genetic disorder?

I sure wish they had explained a bit about the appliance and how it works. I can't help but be a bit skeptical. I do relate and feel for people suffering from such illnesses, disorders, etc. I was diagnosed with tourettes, ocd, and more at the age of 7. I know far to well the hell that it can be living with such things.

How can I access this treatment in Brazil or nearby?

My aunt that lived from 1917 to 2006 had Tourette's and she would jump like someone goosed her and let out a whoop about every three or four days. She was a wonderful lady.

can i please ask how is this different from FND? As i have fnd and have these symptoms how do you test dor it?

Hi! I am 21 year old female. I had this till the age of 16 and thank god I am haven't had it anymore. Today I learnt what did i suffer from for so many years! At that time i couldn't understand what was actually wrong with me. I always loved dancing and was good at athletics. But the fear of this happening was always in my mind. This also made me loose my 400x4 relay once. But the good thing is i always thought this was because of me thinking about it(basically made up in my mind). So when i was 16 years old i had severe depression, i made myself clear that i will fight depression and several other things including this. For 1 entire year whenever i stepped down from metro go to my tuition i had this. But every day to myself I said that i can do it , i can do it. Trust me after few months I fought it! I never actually fell down like the person in this video did but i couldn't actually walk and i had to stand while i saw others go past me. Watching this video did give me that sort of feeling in my right hand again but i won't let that happen to me ever. So everyone out there fighting this, know that you got this.❤ You have the strength ❤ God bless❤

I posted this in youtube channels : my wife left me and the kids . Very stressful and i developed a muscle spasm which effected my neck and back muscle to draw my head down towards my shoulder. The Doctor sent me home with valium and said to get rest and i did and the spasm released but now that eck and back muscle has seaminly been shortened. So now after 40 yrs if i stress a bit it tightens that shortened back muscle and limit my movement to s degree that caused the nuscle to be sprained and takes a few days to get better. Maybe theres a surgical procedure to lengthen that muscle . Maybe my story will help provide some insite to Doctors on this condition of mine they call Spasmodic Torticollis.

I posted this in youtube channels : my wife left me and the kids . Very stressful and i developed a muscle spasm which effected my neck and back muscle to draw my head down towards my shoulder. The Doctor sent me home with valium and said to get rest and i did and the spasm released but now that eck and back muscle has seaminly been shortened. So now after 40 yrs if i stress a bit it tightens that shortened back muscle and limit my movement to s degree that caused the nuscle to be sprained and takes a few days to get better. Maybe theres a surgical procedure to lengthen that muscle . Maybe my story will help provide some insite to Doctors on this condition of mine they call Spasmodic Torticollis.

my wife left me and the kids . Very stressful and i developed a muscle spasm which effected my neck and back muscle to draw my head down towards my shoulder. The Doctor sent me home with valium and said to get rest and i did and the spasm released but now that eck and back muscle has seaminly been shortened. So now after 40 yrs if i stress a bit it tightens that shortened back muscle and limit my movement to s degree that caused the nuscle to be sprained and takes a few days to get better. Maybe theres a surgical procedure to lengthen that muscle . Maybe my story will help provide some insite to Doctors on this condition of mine they call Spasmodic Torticollis.

Eric Bauza

Wonderful family and amazing youg man❤

Contact Ms. Janice at [email protected]

Hi Doctor, could I please contact you to help my son? I am willing to go anywhere possible to help him.

That’s amazing, wondering if will be spreading around the world, I am in New Zealand and have a kid with severe tics disorder non diagnosed yet where it classified

This is dope. Can’t believe there so many others like me. I’ve dealing with this since I was 15-16. I’m 32 now. 2018 is when I finally got checked out cuz this sht is annoying af!!!!!!!!! Neurologist googled it after I explained the same thing I just read in most of these comments. Boom, PKD. I don’t take pills/drugs. But I was desperate. Not as severe as this video or back then but it is getting there now that I ain’t been taking carbamazepine like I used to. It works but I don’t trust these pharmaceuticals. Been researching natural remedies and centering my chakras. I’ll post if I find anything that works. Anyways…they (neurologists) did an EEG? (Sleep study). And found that I also have obstructive sleep apnea. My mind doesn’t communicate with my body to breathe at night. On every minute, I stop breathing for 30-40 seconds. And often times wake up choking. I was given a cpap. I barely used it in the past even tho I’ve seen the temporary results. More energy, creativity, dreams, etc. I’ve recently picked back up on it now that I have a replacement from the one on recall. I worked at a steel plant in the New York for the past 2 years and worked at City Furniture in Florida beginning of ‘22. I had to get away from both jobs as it was too much on my back. My left shoulder blade area would get inflamed and be hard to sleep on/with and work with. Had X-rays done both times and this time around they realized I have degenerative scoliosis of the thoracolumbar and it’s basically shaped like a S. Which I had knew about back in middle school but I guess it got worse. WHICH TO ME EXPLAINS EVERYTHING! The reason why I have back/shoulder pain is because of my twisted spine. Same SPINE that pushes my back ribs into my lungs as I sleep causing the OBSTRUCTIVE SLEEP APNEA. And when I don’t sleep good enough or like I should it causes my movement disorder. This PKD! It’s better to find the root of the problem rather than just dosing us up with sht we don’t need in our systems. I’m scheduled for an MRI and kinda excited to get this thing checked out. Can’t get too excited 😂🤪🫣. MUCH LOVE FAM!

kzbin.info/www/bejne/jnu0YZutg5uobbM interesting recovery of this patient...

Since this is so rare and hard to find someone with the same thing (and also not so well known for docs too), would it be OK if we all can communicate over something (chat/forum/whatever)? Would be awesome to share stories like progress, if something worsened/got better by doing XYZ, etc. Would be helpful I believe. Please thumbs up so everyone could see. Thanks!

After 5/6 years of hiding it from the world and 2 years after telling my family about it, i finally got diagnosed just yesterday as im now 20, almost 21 years old. I’m so glad and feel at comfort knowing I’m not the only one, cause for a long time i thought i genuinely was the only one, especially because i could never find the correct symptoms online, but here i finally see that there’s many other people like me. It’s of course tiring, cant just stand up, crosswalks, elevators snd hanging out with friends can just be tricky. It’s of course tiring to pretend to be lacing your shoe or as if something got in your eyes, but at least i can now explain to people what it is when it happens in front of them and there’s no way for me to hide it at that moment. I always just told them i have a muscle disorder and had to give this silly explanation on how i try to hide it because i look kind of possessed when i have it, but now i have loving people around me who understand and accept me for who i am! I loved reading these comments, even became a little emotional since it’s only been a day since diagnosis for me, hope to get on medication after my next doctors appointment!

Why am I seeing 10years back videos😮 There is no new treatment for this ha?😢 Should I take tablets till my last breath🙂

👋🏽wow Wo gibts das in Deutschland oder in Austria(Österreich)???

Please how I cantact Dr Sims

Thank you for sharing I will look into this for my son

What happened to him since that time? Is he healed?

This is so touching!💕 God bless u both🙏

That shirt…. Even Mexican people are like naw bro

Goodnight I have cervical and axial dystonia and have been undergoing treatment with botulinum toxin for 3 years, but I only have partial improvement and then the effect of the botulinum toxin wears off and I return to apply the toxin for life All with my neurosurgeon doctor. And she's going to operate on me, put a brain electrode in my brain, I live in Brazil and I get the toxins for free from the government and my life has changed for the worse, I'm not the same person, my joy of living is gone, I don't have it, but posture I hope everyone can treat themselves. This disease has no cure anywhere in the world and there should be a campaign against this disease, but unfortunately the world only thinks about war!

S

❤❤❤❤❤❤

❤❤❤❤

If only Bianca Saez got this.. god bless you, doc.

Bless this man and Dr. Sims

Where can you even get one of those? Dentists are a pain in the ass. I don't even want to think about bringing this to them?

It's hard because in Canada they said they have a foundation but it doesn't help. Tourette is one of the least funded and recognized conditions.

Hi. I am a mother of a son with tourette syndrome . My son is now 16 years old. He was diagnosed in 2015. He was prescribed medication but after studying what is the best treatment I have been able to minimize the tics.

God bless you and your family

Your faith in God is a beautiful thing , sir. Hold onto Him.He loves you , so much ❤

This is hard to see.much respect to you sir , and may God bless and protect you.Heal him , Father God , you above any doctor can.❤

is biden going to go down as the american president that lead to the down fall of america.1. the failed war in Ukraine,economic crisis in the USA,problems with the Isreal normolization with its arabs states,now all out support for isreal, the rise of china as a peace maker .tell me why should any one trust the USA as the self promoter of democracy around the world , what does it mean for democracy knowning that 40 percent of the world is not democratic as the USA would love them to be.None democratic states are becoming richer day by day and that the economic sanctions are increasely shown not to work. china on the rise as a promoter of peace and econmic transformation and development .is USA losing its influence .still rich still the biggest economy but on a down ward fall it cannot never rise from.

Hello Dr,,can you please tell more about this splint ,,when you add or reduce acrylic to splint,,,Thanks

Is it normal to also urinate on yourself during these?

Ou vous êtes situé ?pourquoi ne pas l'écrire ou peut-on vous rejoindre stp 🙏

How can I take this service? I am living in italy. Please reply me

I have the samething and also my daughter.

This is an excellent research article, some highlights below and the reference: ""62% of the patients were initially misdiagnosed. Wrong diagnoses included functional disorder (6 patients), epilepsy (4 patients), panic attack (2 patients), Tourette syndrome (2 patients), and dystonia (1 patient). Two of them sequentially received two wrong diagnoses (epilepsy and functional disorder for one; Tourette syndrome and functional disorder for the other)." ... "Our findings have important implications for care givers concerning patient management and medical education about paroxysmal dyskinesia. PRRT2‐PKD patients should be screened for non‐motor disorders in routine care. A long history of misdiagnosis may play a role in the high level of perceived stigmatization. Improving knowledge about diagnostic clues suggestive of PKD is mandatory." ... "As the perceived stigmatization was tightly linked to delay to diagnosis, we suggest that a long history of misdiagnosis-often involving a wrong diagnosis of functional disorders (29% of patients)-may play a role in the high level of perceived stigmatization. 44 , 45 , 46 , 47 This emphasizes the need to increase knowledge about the diagnostic clues suggestive of PKD." ... Source: Ekmen A et al. "Non‐Motor Symptoms and Quality of Life in Patients with PRRT2‐Related Paroxysmal Kinesigenic Dyskinesia". Mov Disord Clin Pract. 2023 Jul; 10(7): 1082-1089. Published online 2023 Jun 5. doi: 10.1002/mdc3.13795 Pubmed (National Library of Medicine): PMID: 37476308

Pharma? Tears to see this man’s joy

My episodes started in the 10th I’m 22 now I was fine all the way up to 10th grade then boom my whole life changed out the blu like crazy the Carbamazepine they put me on doesn’t work for me all I do is drink 7 bottles of water and I take iron tablets and some Complex b-50 I still have them one time it stopped for 4 months out the blu but came back and I ain’t do nothing different I kept the same routine and all I just wonder has anyway in here overcame this disease and no longer is dealing with it?

Para compartirles que si funciona, tienen muchos niños

Hola me pueden indicar cómo Ca evolucionando ? Hay una asociación en Mexico Tijuana que comentan que no saben de esta opcion

With regards to my comment below with levodopa, this may be of interest to some: Loong SC, Ong YY. "Paroxysmal kinesigenic choreoathetosis: Report of a case relieved by l-dopa" . J Neurol Neurosurg Psychiatry. 1973 Dec; 36(6): 921-924. Pubmed PMID: 4772726 - (free fulltext on PMC Pubmed Central: PMCID: PMC1083591)

I've recently been diagnosed with PKD after approx 9 years of being told it was a mental illness of Conversion Disorder/Functional Neurological Disorder. I can totally relate, police have asked if I'm ok as when I'm out for a walk and I stop, sometimes I go to the ground with these seizure like episodes, totally conscious but just like this video you can't move for a bit. Unfortunately I also have parkinsonism symptoms so my new neurologist has started me on levodopa/carbidopa for a while, working super I will say for some of my symptoms, to get this under control before perhaps trying anti-seizure meds like carbamazapine. Thanks for this video, really helps very much knowing I'm not the only one. All the best to him.