Paroxysmal kinesigenic dyskinesia-PKD: A New Treatment 1B 

Thank you for sharing this! I've just been diagnosed after finding a neurologist who cared rather previous ones that sent me off to psychiatry because of the weird movements etc. they didn't understand where I was diagnosed with the psychiatric mental illness of Conversion Disorder/Functional Neurological Disorder. Again, thanks for sharing and all the best.

I've suffered from this since i was roughly 8 years old, i still remember my first fit as i was only a wee lad in primary school and had absolutely zero idea what was going on, was terrifying at the time. I stopped taking Tegretol when i was about 13/14 as i didn't like how it was making me feel. I have handled the seizures for the best part and have managed to find ways of hiding them when i do have them as they aren't quite as serious as the ones shown above. I find the worst part is how the public deals with them, as you can imagine it can be quite a scary sight for somebody who has no idea what the fuck you're doing so for me hiding the fits which last about 10 seconds was a priority. When i was roughly 16 i stopped having them for about 9 months at the time i was convinced sheer will power would prevail and prevent me from having these odd seizures and i thought that it had but unfortunately that was not the case. Some findings for the people out there that i've managed to log over the years, it would be interesting to see if it was the same for others: 1. My seizures always start in my foot 2. 99% of the time it's my left hand side 3. I do not have seizures when drunk 4. I am more likely to have seizures if smoking cannabis 5. I do not have seizures for at least an hour after waking up 6. More likely to have seizures when nervous 7. most common seizures affect only upper left arm, wrist, leg and feet. 8. More serious seizures which are much rarer affect face, neck and shoulders

Excuse me sir i start to show symptoms of pkd about a year ago. The right side of my body would be affected. I can not open and close my right hand, the right side of my mouth drops and sort of spasms and my right leg gets extrememly week. These episodes can last up to 30 secs and up to 50 times a day. I went to hospital after the first episode and the neurologists were very unsure what it is and prescibed me tegretol and told me to contact them in six months. I took it for a week and could not

Dr. Sims, where are you and how can I get my husband an appt to see you?? I believe he has been suffering from pnkd for years. He Is a disabled veteran and the VA has no interest in finding out what is really wrong with him. We would greatly appreciate any help you may be able to offer.

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

.... Cope on it. I can not get a hold of the neurologists for the life of me. A year later and i still have these occurances. Will my condition worsen? I am 25. Is there any other medication. Your video made me cry

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