Dystonia Support Group
Dystonia (literally, "abnormal muscle tone") is a generic term used to describe a neurological movement disorder involving involuntary, sustained muscle contractions. Dystonia may affect muscles throughout the body, in certain parts of the body, or may be confined to particular muscles or muscle groups.
hi all happy new year and all that jazz!
so i'm not going to bore you with my entire history, i am on the chronic pain group, migraine group, check out my profile to catch up on all that. i dont want to waste your time!
so, i have suffered from these " unknown spasm/seizures for years. they occur every few months. when i talk to the doctors they blow me off and just say they are muscle spasms. NO THEY ARE NOT!!!! i know the difference but try and tell them that!!
so the symptoms usually start with this weird "tension" for lack of a better word (i cant eve really describe it better). then my right arm starts twitching and jerking. then after awhile i cant lay still because my whole right side is twisting sideways uncontrollably. next starts my chest/sternum/back: it starts bowing my back forward to the point i want to cry. during all this both arms cant stay still. it feels like if i try they will explode if i dont move them forward or backward or up or something!.
somethimes getting up and walking around or even (dont laugh) orgasm will help.
this will usually last anywhere from 45 minutes to an hour but there is a tension there for hours afterwards.
all the rules changed last friday afternoon:
at about 11:30 i started getting the twitches and tension. first of all in the past it always happened at night.
by 1:00 it was so bad that when my boyfriend tried to lay across me to hug me i bowed my back so hard i almost threw him off.
we went to the hospital and they FINALLY saw the seizures and realized they were not spasms they diagnosed it as non epileptic seizure brought on by anxiety.i dont buy the anxiety part for some reason. since then i have been extremely shakey, tired, and my co-ordination is really off. i have never had lasting effects before. i see my regular doc tomaorow.
after doing some research i found some info on dystonia and here i am!!! am i at the right place???? does anyone have any ideas?? please help me, i'm scared.
so i'm not going to bore you with my entire history, i am on the chronic pain group, migraine group, check out my profile to catch up on all that. i dont want to waste your time!
so, i have suffered from these " unknown spasm/seizures for years. they occur every few months. when i talk to the doctors they blow me off and just say they are muscle spasms. NO THEY ARE NOT!!!! i know the difference but try and tell them that!!
so the symptoms usually start with this weird "tension" for lack of a better word (i cant eve really describe it better). then my right arm starts twitching and jerking. then after awhile i cant lay still because my whole right side is twisting sideways uncontrollably. next starts my chest/sternum/back: it starts bowing my back forward to the point i want to cry. during all this both arms cant stay still. it feels like if i try they will explode if i dont move them forward or backward or up or something!.
somethimes getting up and walking around or even (dont laugh) orgasm will help.
this will usually last anywhere from 45 minutes to an hour but there is a tension there for hours afterwards.
all the rules changed last friday afternoon:
at about 11:30 i started getting the twitches and tension. first of all in the past it always happened at night.
by 1:00 it was so bad that when my boyfriend tried to lay across me to hug me i bowed my back so hard i almost threw him off.
we went to the hospital and they FINALLY saw the seizures and realized they were not spasms they diagnosed it as non epileptic seizure brought on by anxiety.i dont buy the anxiety part for some reason. since then i have been extremely shakey, tired, and my co-ordination is really off. i have never had lasting effects before. i see my regular doc tomaorow.
after doing some research i found some info on dystonia and here i am!!! am i at the right place???? does anyone have any ideas?? please help me, i'm scared.
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" Name A Term Used In Football " ?
You need to see a neurologist or a movement disorder's doctor.
Good luck. I have been fighting dystonia for 20 years.
I agree that a neurologist would be a wise choice. Mine was the one who diagnosed me and after a bit of trials with different medications we got it under control with the injections. Thing is that without insurance those injections have to be put on hold as they are very expensive.
I hope this helps...
It snowed, so good day to chill out but really its a bummer. My body wants to lay around because it hurts but I want to get things done.
Any suggestions...
Honestly... I need a friend that understands my predicament.
sometimes just having a name to put to it helps take the scary out of it! i will be here with more questions often!!
Slipped & Feel On A Rainy Day
At Work
Bumped My Head
2 Weeks Later Could Not Turn Neck,
6 Months Later Was Diagnosed With Dystonia/Spasmodic Torticollis..
Tried Botox Got Little Or No Relief
8 Major Surgeries At UCLA
I Believe You Need To See A GOOD, Neurologist.
I Was Told By 1 Doctor It Was All Physicological !!!
TAKE CARE
i'm getting genetic testing and being tested for dystonia secondary to wilsons disease.
i was told my symtoms were anxeity for a long time. i also have fibro (witch i was told was anxiety or dperession for a long time) and an unpecified inflamaotry arthirtis.
I just wanted to let you know your not alone and i'm here in the same boat wondering about this illness. I sure hope you get answers soon.
take care ok?