I have a movement disorder. I have often wondered about dystonia. My movements are mostly upper body. Some very quick and violent; Some involve my head twisting quickly and being held in position for a few seconds; some are slow, but again only sustained for seconds. I have problems with my legs too. The muscles seem to go into spasm when I walk, although when I have my legs examined at rest I am told the tone is normal! None of my movements are sustained for any more than a few seconds.
Your description of dystonia is pretty good but it isn't as common as some people are being led to believe. Muscle spasms are very common. Atheletes suffer muscle spasms that are very similar to what dystonia patients experience but they don't have dystonia. We need to be careful not to use dystonia as a general term and confuse the public. Muscle spasms can be treated. I have a very severe case of dystonia since 6 years old, 55 years and am the author of a book and website.
I have this also and was diagnosed with Lyme Disease a few months ago. IT has gotten better with Antibiotic treatment but when I went off abx for 10 days it came right back.
Have you been tested for Lyme Disease with a Western Blot test?
(cont'd from below) being told to patients as their "diagnosis" (this happens when the doctor CAN'T FIND A TRUE DIAGNOSIS)!!! PLEASE click on my screen name in order to watch some informative Lyme videos, then pass it on!!!
TWO WORDS...LYME DISEASE!!! When Lyme isn't properly DIAGNOSED &/or isn't treasted ON TIME, it can & USUALLY DOES become CHRONIC, & can affect from one to ALL bodily systems, including the NEUROLOGICAL system...and, BECAUSE CHRONIC illness brings in BILLIONS of $ everyday, CHRONIC Lyme has yet to even be acknowledged by the CDC, IDSA, etc. (THE GEOVERNMENT), thus, doctors NOR labs NOR the public are PROPERLY EDUCATED re Lyme! BTW, dystonia, fibromyalgia, IBS, etc. are merely SYMPTOMS, (cont'd)
I am a 13 year old female and I suffer from Complex Regional Pain Syndrome and Dystonia in my left leg and right arm, so I found the video very interesting
I have Complex Regional Pain Syndrome and have been having muscle spasms (cramps and jerks)as a part of my other symptoms. People with CRPS are at great risk for developing Dystonia. I know a couple of people who have twisted up limbs they can't use! And the pain it causes as well is hideous on top of already sickening pain. Your doing great work. Congratulations! I have an awareness CRPS video if anyone wants to view it as well on here. Take care
me too, throat muscles involivng vocal changes, oralmandibular, eyes, cervical. enough, yet nowhere near as bad as many folks.
thanks for sharing this.
amyfricano 1 year ago
appreciate the explanation
4727JOYCE 2 years ago
I have a movement disorder. I have often wondered about dystonia. My movements are mostly upper body. Some very quick and violent; Some involve my head twisting quickly and being held in position for a few seconds; some are slow, but again only sustained for seconds. I have problems with my legs too. The muscles seem to go into spasm when I walk, although when I have my legs examined at rest I am told the tone is normal! None of my movements are sustained for any more than a few seconds.
kaazoom 2 years ago
I was diagnosed with Dystonia a few months ago. As others who posted, I also have Lyme Disease. This is the cause of it for me.
12thJupiter 3 years ago
Your description of dystonia is pretty good but it isn't as common as some people are being led to believe. Muscle spasms are very common. Atheletes suffer muscle spasms that are very similar to what dystonia patients experience but they don't have dystonia. We need to be careful not to use dystonia as a general term and confuse the public. Muscle spasms can be treated. I have a very severe case of dystonia since 6 years old, 55 years and am the author of a book and website.
brstvena 3 years ago
can you please send me some liturature thank you
lonestardehy6 3 years ago
I have this also and was diagnosed with Lyme Disease a few months ago. IT has gotten better with Antibiotic treatment but when I went off abx for 10 days it came right back.
Have you been tested for Lyme Disease with a Western Blot test?
LedByTheLamb 3 years ago
Ps. Sorry...to see the other Lyme videos, after clicking on my screen name, you must click on the number "18" after the word "Favorites"!
krubino 3 years ago
(cont'd from below) being told to patients as their "diagnosis" (this happens when the doctor CAN'T FIND A TRUE DIAGNOSIS)!!! PLEASE click on my screen name in order to watch some informative Lyme videos, then pass it on!!!
krubino 3 years ago
TWO WORDS...LYME DISEASE!!! When Lyme isn't properly DIAGNOSED &/or isn't treasted ON TIME, it can & USUALLY DOES become CHRONIC, & can affect from one to ALL bodily systems, including the NEUROLOGICAL system...and, BECAUSE CHRONIC illness brings in BILLIONS of $ everyday, CHRONIC Lyme has yet to even be acknowledged by the CDC, IDSA, etc. (THE GEOVERNMENT), thus, doctors NOR labs NOR the public are PROPERLY EDUCATED re Lyme! BTW, dystonia, fibromyalgia, IBS, etc. are merely SYMPTOMS, (cont'd)
krubino 3 years ago
Great video - thanks for posting it!
I am a 13 year old female and I suffer from Complex Regional Pain Syndrome and Dystonia in my left leg and right arm, so I found the video very interesting
Alison
ajkay159 3 years ago
Hi there,
I have Complex Regional Pain Syndrome and have been having muscle spasms (cramps and jerks)as a part of my other symptoms. People with CRPS are at great risk for developing Dystonia. I know a couple of people who have twisted up limbs they can't use! And the pain it causes as well is hideous on top of already sickening pain. Your doing great work. Congratulations! I have an awareness CRPS video if anyone wants to view it as well on here. Take care
melgus99 3 years ago
A good friend of mine e-mailed me regarding this video. I will pass it on to all in my address book.
dbkparm 4 years ago
We are getting quite a few good valuable comments about this video. pass the link along. No one is immune to dystonia.
care4dystonia 4 years ago
Thanks for posting this! You have a open invite to be on my wife's radio show!!!
askthedj2007 4 years ago
Wow, Beka - You have outdone everyone with this great video.
K.M
care4dystonia 4 years ago
Thanks, Kath- I'm new to YouTube so I cant answer about your email privacy question.
Sorri.
beka
care4dystonia 4 years ago
Thanks kath-
Still find this system complex...!
beka
care4dystonia 4 years ago
Beka,
Great Video. I appreciate your efforts for awareness against this horrible disorder.
Rick Staab, Tyler's Hope for a Dystonia Cure
tylershope 4 years ago
Thanks Rick....Feel free to use the Video link to educate others about dystonia..
beka
care4dystonia 4 years ago