Hey just to pass on some positive stuff I found a decent chiropractor to work with when doctors stopped being willing to even “try.” In working with him I’ve been able to wire in new pathways for movement. I couldn’t write when I came to home in the fall a few months later im doing chin-ups upside down at the gym. There’s a lot of reasons to have hope even if doctors don’t have any. I really like watching the videos from YJ Clinic when im feeling down to remind myself what’s possible. Hope you find healing friend
I have throat dystonia. No one is listening. I've had this for 16 or maybe 17 yrs. I have quit breathing multiple times. I wish someone would listen to me. This is not anxiety. They keep giving me anxiety medication. Where these meds are awsome, they do not help. I just recently found. A. name. Alcohol helps very much.i do nor like drinking. I wish someone would listen. I've starred to quit breathing when I sleep. I wish.someone would listen. I just want someone to listen
I have cervical dystonia as well. I get weekly injections in my neck for the pain, but the twisting doesn't stop. It's so debilitating, I don't have the same quality of life.
Same here I suffer so much. Sometimes I think family doesn't fully understand. Prayers for all of you 🙏 ❤️. We fight each day . I will be getting shots soon . A little nervous.
@@glolovesjesuschrist2023 Prayers for you as well 🙏 Don't be nervous about the injections. The jabs hurt but it really helps with the pain. No side effects, either. I tell my family that my neck twisting could be compared to the tense pressure of an arm wrestle 💪😖
In the past 7 months I have seen 2 neurologist and don't have another appointment until 😢 November..It would nice to look in wife's wife's eyes again, without lifting my head with my hands. Hope you all the best.
Dystonia is a word that is part of my world every minute of every day since Parkinson's diagnosis. Took 4 yrs to get there because I don't have a tremor. My neck and shoulders blade muscles are in constant pain. Very limited in life at 50. Carbidopa levodopa helps tremendously. I feel this professor is talking directly to me!!😊 Thank you for information.
Great advice, thank you! I am still waiting to see a neurologist, but from everything I've read I'm fairly sure I have CD. So this gives me some direction to work with, in the meantime.
My hands cramp when I clean or cook sometimes flares up when I'm trying to write or type but its usually just cooking and cleaning mostly. I had an emg and nothing shown on my right arm or hand. Dr said something was wrong with my left elbow but because it happens equally in my left and right hand she wants me to do an mri but I can't afford one right now.
Living with this is so hard. I had to move back in with my parents after dystonia knocked me down after a bad accident. The worst of it is my mother does not have any idea what it is and she thinks my movements are in in my control because I’ve been able to recover some movement with a lot of effort. Its quite hard trying to live together. Its very hard for me to leave the house but I feel a lot better when I do. Talking to strangers is really helpful actually. Its a nice reminder that people don’t hate you for moving weird. Its also really helpful to tell others what a great day Im having because my legs are going where I want them to so I can get out and see how beautiful life is! For me I feel like I could probably overcome the disabling parts of the disease if I can just get away from the family stress. Not being “allowed” to be sick makes home such a stressful place the storms never really stop but before I moved in I was making tons of progress. Just got so worn out with rehab it started to be difficult to make myself food and such. Kinda in a weird place in recovery where I feel better than I have in a year but Im totally worn out from the journey. Even got myself back to weightlifting but the membership came from my mother and she was happy to tell me how bad she regretted it because I took a few days off. Im not gonna lie I really hate this. When I see the doctors they treat me like Im experiencing a miracle and then my mother treats me like Im a lazy no good son. I really dont understand. I just want to recover. Im sick of being hated for having an illness. Im starting to realize I was always right about my family, my friends were right, my grandma was right. Everybody is right except my mother who’s wrong. Its a lot to accept tho. I think in a few years I will be very glad that dystonia set me free from a lifetime of toxic love. There is something really great about the emotional clarity Im getting as I recover. I think family life should be a big focus of treatment for dystonia patients. When Im around uplifting people the spell of dystonia breaks around toxic family it definitely gets worse.
Things are a lo better now! Its been a ton of work but Im about 90% recovered! Just deadlifted 350lbs a few days ago even. Dystonia is definiely beatable!
I hope one day, soon we can have cure ;all of us get rid of this disease.
Hey just to pass on some positive stuff I found a decent chiropractor to work with when doctors stopped being willing to even “try.” In working with him I’ve been able to wire in new pathways for movement. I couldn’t write when I came to home in the fall a few months later im doing chin-ups upside down at the gym. There’s a lot of reasons to have hope even if doctors don’t have any. I really like watching the videos from YJ Clinic when im feeling down to remind myself what’s possible. Hope you find healing friend
Please soon. Amen.
I have throat dystonia. No one is listening. I've had this for 16 or maybe 17 yrs. I have quit breathing multiple times. I wish someone would listen to me. This is not anxiety. They keep giving me anxiety medication. Where these meds are awsome, they do not help. I just recently found. A. name. Alcohol helps very much.i do nor like drinking. I wish someone would listen. I've starred to quit breathing when I sleep. I wish.someone would listen. I just want someone to listen
Suffering too much and life limitition
jesus coming my friend
Thank you for the information. I have Cervical Dystonia, horrible pain in my neck.
I have cervical dystonia as well. I get weekly injections in my neck for the pain, but the twisting doesn't stop.
It's so debilitating, I don't have the same quality of life.
Same here I suffer so much. Sometimes I think family doesn't fully understand. Prayers for all of you 🙏 ❤️. We fight each day . I will be getting shots soon . A little nervous.
@@glolovesjesuschrist2023 Prayers for you as well 🙏
Don't be nervous about the injections. The jabs hurt but it really helps with the pain. No side effects, either.
I tell my family that my neck twisting could be compared to the tense pressure of an arm wrestle 💪😖
In the past 7 months I have seen 2 neurologist and don't have another appointment until 😢 November..It would nice to look in wife's wife's eyes again, without lifting my head with my hands. Hope you all the best.
Neurologists here won't even see me and say there's nothing they can do. My doctor has tried.
What about the dystonia seizures?
There is no help
Dystonia is a word that is part of my world every minute of every day since Parkinson's diagnosis. Took 4 yrs to get there because I don't have a tremor. My neck and shoulders blade muscles are in constant pain. Very limited in life at 50. Carbidopa levodopa helps tremendously. I feel this professor is talking directly to me!!😊 Thank you for information.
Great advice, thank you! I am still waiting to see a neurologist, but from everything I've read I'm fairly sure I have CD. So this gives me some direction to work with, in the meantime.
My hands cramp when I clean or cook sometimes flares up when I'm trying to write or type but its usually just cooking and cleaning mostly. I had an emg and nothing shown on my right arm or hand. Dr said something was wrong with my left elbow but because it happens equally in my left and right hand she wants me to do an mri but I can't afford one right now.
This is a life punishment disease you don't die but live in much pain and discomfort I wish treatment will be gotten one day
😔
Living with this is so hard. I had to move back in with my parents after dystonia knocked me down after a bad accident. The worst of it is my mother does not have any idea what it is and she thinks my movements are in in my control because I’ve been able to recover some movement with a lot of effort. Its quite hard trying to live together.
Its very hard for me to leave the house but I feel a lot better when I do. Talking to strangers is really helpful actually. Its a nice reminder that people don’t hate you for moving weird. Its also really helpful to tell others what a great day Im having because my legs are going where I want them to so I can get out and see how beautiful life is!
For me I feel like I could probably overcome the disabling parts of the disease if I can just get away from the family stress. Not being “allowed” to be sick makes home such a stressful place the storms never really stop but before I moved in I was making tons of progress. Just got so worn out with rehab it started to be difficult to make myself food and such. Kinda in a weird place in recovery where I feel better than I have in a year but Im totally worn out from the journey.
Even got myself back to weightlifting but the membership came from my mother and she was happy to tell me how bad she regretted it because I took a few days off. Im not gonna lie I really hate this. When I see the doctors they treat me like Im experiencing a miracle and then my mother treats me like Im a lazy no good son.
I really dont understand. I just want to recover. Im sick of being hated for having an illness. Im starting to realize I was always right about my family, my friends were right, my grandma was right. Everybody is right except my mother who’s wrong. Its a lot to accept tho. I think in a few years I will be very glad that dystonia set me free from a lifetime of toxic love. There is something really great about the emotional clarity Im getting as I recover. I think family life should be a big focus of treatment for dystonia patients. When Im around uplifting people the spell of dystonia breaks around toxic family it definitely gets worse.
Your not alone. I feel like the same.
Me too
Things are a lo better now! Its been a ton of work but Im about 90% recovered! Just deadlifted 350lbs a few days ago even. Dystonia is definiely beatable!
Yes I know what you mean.
I have cervical DYSTONIA, very very painful, it’s horrible disease 😢I did deep brain surgery, didn’t help my pain, but my tremors stopped.
superb summary!
Head trauma
Torso and legs left side
very good
Definitely anxiety
You need to talk about medications that people have taken from the doctor like Metronidazole ,that causes Dystonia in people ,also could be genetic!
Why you didnt explain mechanism of development od dystonia? Why dbs helps, why should be dbs of gpi not thalamus?
WE NEED A CURE 😔
rapture
I have full body generalized dystonia and paralysis full body as well none cure this sucks but yet we are forgot
What about dystonia seizures?
Can any one tell me who I can contact for help?!?
Movement disorders specialist.
Monique, I'm just beginning. They are sending me to a neurologist for nerve studies. Good luck
I am going to look into acupuncture for my grandson
Acupuncture treatment didn’t help me at all. But hopefully it helps your grandson.