i do think dystonia can be progressive. This hit me fast- just in my right leg and then travelled up to every muscle on my right side. Though I have the baclofen pump to help with the violent spasms I still have bad days and some dystonia seems to be "beating" the pump. I am now having cervical dystonia (neck) so bad i am going back for botox treatment on june 30th to try to ease the pain. meds 4 pain help but don't erase it.
I had late onset aged 41 and it has been getting worse though the neurologist said it usually stabilises and doesn't progress. I know exactly where you are coming from trying to get your limbs to stay still as you feel like a freak when they are not still. In my experience if I am having a bad time with it my voice also quivers so probably you wouldn't have been able to talk without subtitles making this video!!! Thanks for your video as it makes me feel I am not alone....
some people have sent messages saying i look fine. all i can say is it took 4 days to find a good moment to film this. and everyone can "put on their good face" in real life so i tried to be as still as i could and had my meds. after this i was twitchy for awhile:)
Hey,
What you do and the awareness you raise about dystonia on your channel is fantastic.
You're so brave to go through something so awful yet you still smile and share your story with us even though that must be difficult.
I really admire your strength.
Thanks : )
fucko101 2 years ago
i do think dystonia can be progressive. This hit me fast- just in my right leg and then travelled up to every muscle on my right side. Though I have the baclofen pump to help with the violent spasms I still have bad days and some dystonia seems to be "beating" the pump. I am now having cervical dystonia (neck) so bad i am going back for botox treatment on june 30th to try to ease the pain. meds 4 pain help but don't erase it.
ShakeyAmy 2 years ago
I had late onset aged 41 and it has been getting worse though the neurologist said it usually stabilises and doesn't progress. I know exactly where you are coming from trying to get your limbs to stay still as you feel like a freak when they are not still. In my experience if I am having a bad time with it my voice also quivers so probably you wouldn't have been able to talk without subtitles making this video!!! Thanks for your video as it makes me feel I am not alone....
jcrazar 2 years ago
5 star keep up the good work.
BrianJunglist 3 years ago
some people have sent messages saying i look fine. all i can say is it took 4 days to find a good moment to film this. and everyone can "put on their good face" in real life so i tried to be as still as i could and had my meds. after this i was twitchy for awhile:)
ShakeyAmy 3 years ago
WOW
colerain777 3 years ago