My mam has dystonia in her neck so it shakes back and forth and we know how hard it is to go through it daily, sometimes she has really bad episodes and she has to have botox in her neck because it gets so bad so, i understand
@abc123schnappi Thanks... I'm actually lined up to receive Botox injections. Only problem is that they are super expensive here. As soon as I get them, it should take some of the edge off so I can get back to painting. Which is what I love to do.....
I was just watchin and I am going to be making some more vids and yes it takes a lot of courage to do this...I have been suffering from Segmental Dystonia since I was 19 and am now 37...it takes a toll, and the meds...and well for the longest they did not know what was wrong but now that they have it pegged hopefully one of my treatments will work, if your help let me know. Bright Blessings.
Hi All STs. I have been suffering from ST since 1996. I had it when I was studying in Melbourne Australia back then. I had to postpone one semester of my study and return back to Malaysia to recuperate before returning back to complete my study. The onset of my illness was felt on the coldest winter in Melbourne. Being Asian, the winter was then something that my body had to get used to. My specialist was Dr Robert Hjorth (Melbourne) and Dr Haniffah (Penang Malaysia). I realized that by staying
its take me 3 years to be brave enough to show me in a haveley seizure. so you find me also one tape in a bad day. but also the effect whenn i go in transmissionmedtitation. the only moments i sit still. i even can lot lay down. in meditation a move for almost 2 hours not. keep yourself strenght. the bads moments wass whenn the secons specialist say i can nothing do for you.
Hey there, the name is Dave and I'm a nneurology resident with the University of Toronto doing a study on dystonia and adaptation. If you're interested I was wondering if I could pick you're brain? Drop me a line. Dave
As many who have written to you. I have this also. When it starts if I get my meds on board right away and take it easy i usually do ok. But if I do not it gets out of control. You are the first person who I have seen that has very similar leg symptoms where it spasms and shakes or tremors really bad like mine. Good luck. Would love to chat sometime .
@Jules1999 The meds they have me take now have helped a lot. I'm not against Marijuana. I'd rather have that legal over alcohol any day. I just couldn't go that route because of my 3 lil girls, and my 4 year old has real bad asthma and other breathing problems. So, even if it would help me, I would never risk anything with my kids health.
I just recently was diagnosed with Dystonia and I am currently in the hospital because of it. They are going to do an MRI and a lumbar puncture, to find out the cause of it. What treatments are you on? Are you any better?
So that cheerleader said she got dystonia from a flu shot? Well, i know a man of about 60 years who had a severe allergic reaction to a flu shot several years ago, he was in critical condition for a year, and was basically paralyzed. After about 10 years, he has slowly regained a lot of control back. He was/is very tall so, he has to use crutches, but he can walk at least. But what he had wasn't anything like dystonia, so i don't think you could get it from a flu shot...
so is this like the opposite of what michael j fox has? ima try to look up dystonia, ive never heard of it until i saw this. and i saw this cuz i saw your pc vids.
@chrisfur2 Just wanted to let you know that that cheerleader ended up being a huge faker for publicity, and is actually getting charges pressed on her. It's kind of like what Michael J. Fox has. It's a neurological issue mainly causing spasms and uncontrolable shaking.
@jstark069 i thought it was fake from the first moment i saw it. im glad shes getting charged. Impersonating a handicapped person is only funny when Johny Knoxville did it in the Ringer, other than that it isnt cool at all.
and you keep fighting on man, these scientist and stem cell researchers have to come up with something. i mean, they already can cure diabetes.
youre awsome man i cant see how u can stand it it drives me crazy when i cant pop my neck or muscle is sore.. keep going like u are its good you can keep your sanity
i feel verry verry sorry for u man, this video i found verry distressing, i herd u had to sell ur GRFX Card to pay for ur pills, i reli wish there was something i could do to help u, i hate to se a fellow PC modder like this, hope things get better, all the best. Dom.
Actually ended up having to sell the whole PC. few weeks after I made this for my nuerologists, went home from a hospital stay, found my wife in bed with a guy. Sucks horribley, but they ended up getting me on the meds Baclofen and Tizanzidine, which nearly literally stopped my spasms in their tracks. Now I'm doing much better, I see my little girls alot andagressively doing my painting. I never threw in the towel because of my kids and I'm glad I didn't. Who needs a cheating wife? Not me. :)
I am proud of you for doing this video... I, too am doing videos now, and also have chorea and dystonia. Props to you for the courage. Try to keep smiling. :)
Thanks SO MUCH for sharing. I have cervical dystonia but seems to be going to other muscles now. You explain all the little things so well. More and more I feel OK because of people like you. Thankyou.
I was told I also have Dystonia (most likely , there are other things they think but they think it is dysonia) I have had it since the age of 6 or so and I am 17 now. I used to cry so much when I had it younger. I can relate so much to what this feels like.
When i over exhaust myself it lessens or goes away for the time being. I up to recently this year have been blinking hard. I heard it could cause me to go blind (by chance).
You are an inspiration, thank you for posting this vid.
Hey man I've only watched about 3 of your videos, and I got to hand it to you, you have a pretty great life aside from this. You look really successful. You have a wife and 3 kids right? Awesome. Unbelievably awesome. Look forward to seeing your gaming videos!
Take care.
P.S.- I'm building a budget gaming rig, and I could use some suggestions. :] (I'm 14 and parents are throwing me about 500$ so I'm trying to get the biggest bang for my buck)
Trust me when I say my life is not great. I'm very lucky to have what I have. My lil girls, my wife, and my skills as an artist. I'm very lucky this hasn't attacked my right side, otherwise I couldn't paint. Lucky, is about as good as I can sum it up. I can never work a regular job again (which sucks). I just refused to give in this kind of outcome. Shoot me your personal e-mail and I'd more than happy to help you with great budget build.
well thats fantastic news but dont be set on january to get better you should be set to get better tommorow deadlines are superficial well they are to me anyways peace
Thx, that hit me pretty deep. Never meant to be a person to look up to, except to my 3 daughters. Thank you for that kind remark. I got good news from my neurologists 2day. They said my outcome looks good. They say I could be better by January. They were discussing some kind of electric pacemaker, and gave me some meds which took the shakes away immediately. If it's true. I'll bake them a cake everyday til the day I die.
Thank you, had my neurologist appointment 2day. They were very reassuring that I would be on my way to getting better by early next year. Hard to believe at this point, but good news I'll take any day.
I take walks and do stretches and hit the yard work everyday. I end up sore as hell, but I know it's for the best. There pain, and then thee is required pain. i gotta push myself or else I just end up worse than before.
I have maybe a day between spasms. I get real bad now at least every other day, and it can last up to 8 hours. I can't wait for my new GC either. It'll make the time pass by better.
man i hope the doctors can do sumin for u man i get constant muscle twitches an vibrating sensations some times i feel like am sitin on a washing machine or sumin but the vibrations r comin from inside my body the docs look at me asif am goin mad av had it for over a year now an jus learned to get on with it any way again hope the docs get get u well..
Thank you, appreciate the comment. Best thing to do is go straight to the ER if you are having an episode and have them draw blood. mine showed severe muscle decay in one of the tests and 20 min. later it showed as fine. Luck of the draw, but it did get me headed in the right direction.
i seen a nero last week who had me do a blood test i havnt had results yet my nero says there isnt any indecation that i got anythin serious all tho i have all over musle twitches including my tongue witch she said can be a symtom of motor nouron disease but i got no weakness so thats pretty much ruled out the thing that gets to me is not knowing wot it is thats causing my symtoms. do the docs know wots causing ur symtoms
Well I guess I've had it my whole life. That tells you how hard it is to diagnose. I had pancreatic failure when I was 26. Shingles when I was 19. They said i had a heart attack and stroke at one point but I don't remember any of it. Had signs of kidney failure, and the most recent an enlarged prostate. Turned out it was my intestines spasming, squeezing, and injuring my other organs, making it look like other issues. Not til the prostate thing did they figure it out.
My mam has dystonia in her neck so it shakes back and forth and we know how hard it is to go through it daily, sometimes she has really bad episodes and she has to have botox in her neck because it gets so bad so, i understand
abc123schnappi 1 month ago
@abc123schnappi Thanks... I'm actually lined up to receive Botox injections. Only problem is that they are super expensive here. As soon as I get them, it should take some of the edge off so I can get back to painting. Which is what I love to do.....
jstark069 1 month ago
I was just watchin and I am going to be making some more vids and yes it takes a lot of courage to do this...I have been suffering from Segmental Dystonia since I was 19 and am now 37...it takes a toll, and the meds...and well for the longest they did not know what was wrong but now that they have it pegged hopefully one of my treatments will work, if your help let me know. Bright Blessings.
ioldanach7 4 months ago
Hi All STs. I have been suffering from ST since 1996. I had it when I was studying in Melbourne Australia back then. I had to postpone one semester of my study and return back to Malaysia to recuperate before returning back to complete my study. The onset of my illness was felt on the coldest winter in Melbourne. Being Asian, the winter was then something that my body had to get used to. My specialist was Dr Robert Hjorth (Melbourne) and Dr Haniffah (Penang Malaysia). I realized that by staying
revup2 4 months ago
I have this too. I hate the numbness. When ever it gets really bad It feels like my veins are exploding. And the pain sucks....
amandarcurd 5 months ago
its take me 3 years to be brave enough to show me in a haveley seizure. so you find me also one tape in a bad day. but also the effect whenn i go in transmissionmedtitation. the only moments i sit still. i even can lot lay down. in meditation a move for almost 2 hours not. keep yourself strenght. the bads moments wass whenn the secons specialist say i can nothing do for you.
margarethaverbraeken 6 months ago
Honestly I kinda wanna cry cause this happen to good people
rampage12377 6 months ago
Hey there, the name is Dave and I'm a nneurology resident with the University of Toronto doing a study on dystonia and adaptation. If you're interested I was wondering if I could pick you're brain? Drop me a line. Dave
neurodoc170 7 months ago
Hi there
As many who have written to you. I have this also. When it starts if I get my meds on board right away and take it easy i usually do ok. But if I do not it gets out of control. You are the first person who I have seen that has very similar leg symptoms where it spasms and shakes or tremors really bad like mine. Good luck. Would love to chat sometime .
MsKat65 8 months ago
I wonder if Medical Marijuana would help .. I know it relaxes the body and helps with pain.
Jules1999 8 months ago
@Jules1999 The meds they have me take now have helped a lot. I'm not against Marijuana. I'd rather have that legal over alcohol any day. I just couldn't go that route because of my 3 lil girls, and my 4 year old has real bad asthma and other breathing problems. So, even if it would help me, I would never risk anything with my kids health.
jstark069 8 months ago
Thanks for sharing your experience!
Best wishes for you and your family!
Taragashi 1 year ago
stay strong man.
Jsmooth7444 1 year ago
I just recently was diagnosed with Dystonia and I am currently in the hospital because of it. They are going to do an MRI and a lumbar puncture, to find out the cause of it. What treatments are you on? Are you any better?
ILUVHORSES1981 1 year ago
This has been flagged as spam show
how are you now? I have the same thing..
250maine 1 year ago
how are you now? I have the same thing..
250maine 1 year ago
Comment removed
250maine 1 year ago
So that cheerleader said she got dystonia from a flu shot? Well, i know a man of about 60 years who had a severe allergic reaction to a flu shot several years ago, he was in critical condition for a year, and was basically paralyzed. After about 10 years, he has slowly regained a lot of control back. He was/is very tall so, he has to use crutches, but he can walk at least. But what he had wasn't anything like dystonia, so i don't think you could get it from a flu shot...
psychoclown420 1 year ago
so is this like the opposite of what michael j fox has? ima try to look up dystonia, ive never heard of it until i saw this. and i saw this cuz i saw your pc vids.
chrisfur2 1 year ago
@chrisfur2 i just saw a video of that cheerleader that "got" dystonia from a flu shot, she was able to run normal and walk backwards normal.
chrisfur2 1 year ago
@chrisfur2 Just wanted to let you know that that cheerleader ended up being a huge faker for publicity, and is actually getting charges pressed on her. It's kind of like what Michael J. Fox has. It's a neurological issue mainly causing spasms and uncontrolable shaking.
jstark069 1 year ago
@jstark069 i thought it was fake from the first moment i saw it. im glad shes getting charged. Impersonating a handicapped person is only funny when Johny Knoxville did it in the Ringer, other than that it isnt cool at all.
and you keep fighting on man, these scientist and stem cell researchers have to come up with something. i mean, they already can cure diabetes.
chrisfur2 1 year ago
@jstark069 i thought it was fake from the first moment i saw it. im glad shes getting charged.
and keep fighting on man, these scientist and stem cell researchers have to come up with something. i mean they can cure diabetes already.
chrisfur2 1 year ago
youre awsome man i cant see how u can stand it it drives me crazy when i cant pop my neck or muscle is sore.. keep going like u are its good you can keep your sanity
savvy421 1 year ago
You're awesome, keep trooping, man, I can't imagine any girl who'd give you up :)
jillybean180 2 years ago 6
Thank you for that kind remark. I need to move to Canada, cuz the ladies there love me for some reason, lol.
jstark069 2 years ago
Haha oh definitely, cute American guys are always welcomed ;P haha
jillybean180 2 years ago
Sweeeet. I'm commin to live there ayy....
jstark069 2 years ago
@jstark069
yeah your a cutie, I have dystonia too so I understand what you are going through.
ILUVHORSES1981 1 year ago
i feel verry verry sorry for u man, this video i found verry distressing, i herd u had to sell ur GRFX Card to pay for ur pills, i reli wish there was something i could do to help u, i hate to se a fellow PC modder like this, hope things get better, all the best. Dom.
lilSmithyD 2 years ago
Actually ended up having to sell the whole PC. few weeks after I made this for my nuerologists, went home from a hospital stay, found my wife in bed with a guy. Sucks horribley, but they ended up getting me on the meds Baclofen and Tizanzidine, which nearly literally stopped my spasms in their tracks. Now I'm doing much better, I see my little girls alot andagressively doing my painting. I never threw in the towel because of my kids and I'm glad I didn't. Who needs a cheating wife? Not me. :)
jstark069 2 years ago
Im verry verry glad to hear that ur doing much better,and yes your right bu dont need a cheeting wife!
all the best man, hope u get a rig back up soon,
lilSmithyD 2 years ago
I am proud of you for doing this video... I, too am doing videos now, and also have chorea and dystonia. Props to you for the courage. Try to keep smiling. :)
bennasdwarf 2 years ago
Thanks SO MUCH for sharing. I have cervical dystonia but seems to be going to other muscles now. You explain all the little things so well. More and more I feel OK because of people like you. Thankyou.
julesdownunder 2 years ago
Man!! may God always be by your side I wish the best for you!! ^^
Hunthrexx 2 years ago
aww thank you for sharing this wishin you and your family all the best ^_^
chickOyumO 2 years ago
Thank you for the kind remark, but my wife cheated on me and left me with the kids earlier this week because of this condition.
jstark069 2 years ago
I'm so sorry to hear; that's so messed up. You deserve better and better things will come to you. Good luck and just keep strong and keep smiling :)
chickOyumO 2 years ago
Thank you for sharing this. I recognize some of myself in you. I wish you all the best.
hcim71 2 years ago
I was told I also have Dystonia (most likely , there are other things they think but they think it is dysonia) I have had it since the age of 6 or so and I am 17 now. I used to cry so much when I had it younger. I can relate so much to what this feels like.
When i over exhaust myself it lessens or goes away for the time being. I up to recently this year have been blinking hard. I heard it could cause me to go blind (by chance).
You are an inspiration, thank you for posting this vid.
TurtleMunchkin 2 years ago
It will get better soon just hold on =)
khazuza 2 years ago
Did you get the vaccine at some point.
watch?v=Gxp7lh6HuTo
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AkoyPinoy2 2 years ago
WTF!
=(
this dont looks good!
Trailers360 2 years ago
Hey man I've only watched about 3 of your videos, and I got to hand it to you, you have a pretty great life aside from this. You look really successful. You have a wife and 3 kids right? Awesome. Unbelievably awesome. Look forward to seeing your gaming videos!
Take care.
P.S.- I'm building a budget gaming rig, and I could use some suggestions. :] (I'm 14 and parents are throwing me about 500$ so I'm trying to get the biggest bang for my buck)
supadude23 2 years ago
Trust me when I say my life is not great. I'm very lucky to have what I have. My lil girls, my wife, and my skills as an artist. I'm very lucky this hasn't attacked my right side, otherwise I couldn't paint. Lucky, is about as good as I can sum it up. I can never work a regular job again (which sucks). I just refused to give in this kind of outcome. Shoot me your personal e-mail and I'd more than happy to help you with great budget build.
jstark069 2 years ago
well thats fantastic news but dont be set on january to get better you should be set to get better tommorow deadlines are superficial well they are to me anyways peace
feel great soon
rathy21 2 years ago
wow your so brave i know i wouldnt put myslef on like that your a true person to look up 2 loves your vids and get well soon
rathy21 2 years ago
Thx, that hit me pretty deep. Never meant to be a person to look up to, except to my 3 daughters. Thank you for that kind remark. I got good news from my neurologists 2day. They said my outcome looks good. They say I could be better by January. They were discussing some kind of electric pacemaker, and gave me some meds which took the shakes away immediately. If it's true. I'll bake them a cake everyday til the day I die.
jstark069 2 years ago
Stark i hope you get better soon man :(
467SHARPSHOOTER 2 years ago
Thank you, had my neurologist appointment 2day. They were very reassuring that I would be on my way to getting better by early next year. Hard to believe at this point, but good news I'll take any day.
jstark069 2 years ago
True say man, hey try to move around the house or take a wal outside to flex you muscles !
467SHARPSHOOTER 2 years ago
I take walks and do stretches and hit the yard work everyday. I end up sore as hell, but I know it's for the best. There pain, and then thee is required pain. i gotta push myself or else I just end up worse than before.
jstark069 2 years ago
I got something for you, will post back when I find it.
n1k7873 2 years ago
wow, i'll be praying for you.
PS3andPCgamereviews 2 years ago 4
wow, i didnt know you had this, how often do you have "spells"? i cant wait for you to put the videos up with your new GC!
MrLamf2939sh 2 years ago
I have maybe a day between spasms. I get real bad now at least every other day, and it can last up to 8 hours. I can't wait for my new GC either. It'll make the time pass by better.
jstark069 2 years ago
man i hope the doctors can do sumin for u man i get constant muscle twitches an vibrating sensations some times i feel like am sitin on a washing machine or sumin but the vibrations r comin from inside my body the docs look at me asif am goin mad av had it for over a year now an jus learned to get on with it any way again hope the docs get get u well..
sikpits87 2 years ago
Thank you, appreciate the comment. Best thing to do is go straight to the ER if you are having an episode and have them draw blood. mine showed severe muscle decay in one of the tests and 20 min. later it showed as fine. Luck of the draw, but it did get me headed in the right direction.
jstark069 2 years ago
i seen a nero last week who had me do a blood test i havnt had results yet my nero says there isnt any indecation that i got anythin serious all tho i have all over musle twitches including my tongue witch she said can be a symtom of motor nouron disease but i got no weakness so thats pretty much ruled out the thing that gets to me is not knowing wot it is thats causing my symtoms. do the docs know wots causing ur symtoms
sikpits87 2 years ago
Well I guess I've had it my whole life. That tells you how hard it is to diagnose. I had pancreatic failure when I was 26. Shingles when I was 19. They said i had a heart attack and stroke at one point but I don't remember any of it. Had signs of kidney failure, and the most recent an enlarged prostate. Turned out it was my intestines spasming, squeezing, and injuring my other organs, making it look like other issues. Not til the prostate thing did they figure it out.
jstark069 2 years ago