Help Me Understan Dystonia
I have just been newly Dx with Dystonia, I have a slight tilt to my head, that i have not noticed, the Dr did. I have right hand tremor,not at rest,and a slight tremor to my right foot. None of this is bothersome UNTIL i get to tired and lay down , then i jerk like crazy from head to toe.
I have had RA for a while and had some very terrible pain in my neck, arm, hand, and hips, it seems that all that was DYSTONIA.So is Dystonia pain similiar to myRA? I hear everyone say how severe their symptoms are should i be thankful or will i get worse, like the pulling to the side with my neck?
I have had RA for a while and had some very terrible pain in my neck, arm, hand, and hips, it seems that all that was DYSTONIA.So is Dystonia pain similiar to myRA? I hear everyone say how severe their symptoms are should i be thankful or will i get worse, like the pulling to the side with my neck?
Replies to This Discussion
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Permalink Reply by BDrake on -
Frieda-
My dystonia has become better since my symptoms first began in that there are now more good days than bad; but...My dystonia has progressed to other areas and seems stronger at times. I attribute the better days to the fact that I now don't try to push through it. I sit, I rest, I take it easy & accept the help my family offers. I'll admit I don't always do this willingly. My husband reminds me (tells me) to sit down, but now I listen, where before I would blow him off. Somedays I will look like this:
And other days I look like this:
http://viewmorepics.myspace.com/index.cfm?fuseaction=user.viewPictu...
Ultimately, I think everyone is different in how it effects them. One thing that bothers me a lot though is the weight gain. I believe it's because I now lead a pretty sedintary lifestyle, where before I was a go...go...go kind of person. :( Other's have posted though that they can't keep any weight on...they believe it's because of the calories burned from all the spasming (I think). Either way...I guess I'd rather be chubby, than in so much pain and discomfort all the time. See how it's a cycle...there are so many secondary emotions that dystonia causes. At least for me, but like I've said. I've come a LONG way baby. So each day is new and different. Take one hurdle at a time. Thank God for what you have...because it could always be so much worse. I know there are several on here that are much worse off than me.
~God Bless,
Becky
P.S. You should try posting your questions in the Dystonia Group:
http://community.wegohealth.com/group/dystonia/forum
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Permalink Reply by Rj on -
I can't answer a lot of your questions, but I can at least give you some insight into your neck pulling. I was diagnosed with spasmotic torticollis/cervical dystonia in Oct '07. Originally my head ticked. It started with light ticking and progressed. Eventually it the ticking ended and my head simply turned to the left. At first it was just off center, but now I basically look directly left. So, unfortunately it can progress. Every case is different, so your may stay as it is today, but the possibility for it to progess is there. Certainly wish you the best!!
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Permalink Reply by Lori on -
My neck did the same thing a few years ago it started shaking then eventually turned the the right. I received botox treatment and withing 18 months my syptoms seemed to fade. I have been on an off klonopin for several years. Lately my neck will just jerk to the right for no reason, not knowing when it will happen. It seems to happen when I use my arms a certain way. I have also had trouble with my voice for the last 10 years. Sometimes I go to talk and nothing comes out. I just would like to know if this is something others have experienced. I went to one neurologist and he told me that if I truly had ST that it would not have gone away and he said my muscle spasms were stress related. He said he would still give me botox but I was so angry with him I left and never went back, but I did write me a letter. When I got ST the first time I was on an SSRI antidepressant and I truly believe that is was caused it as I was on a high dose. Since I do suffer from depression I have been on a low dose of an antidepressant but since my neck started doing its own thing again
I decided I would rather fight the depression in other ways rather than aggrevate my neck. I am rattlying on but I just need to speak to other people that understand.
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