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Old 02-14-2012, 06:11 PM   #1
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General Dystonia with spasmodic torticolis

Mom has what we believe to be medication induced dystonia from the mixture of 2 or more meds...this all started on 09/02/2010 it first started by giving her full body tremors while pulling the top of her head toward her back and her chin toward her chest then in march of 2011 it took over her legs...now it has consumed her whole body her foot has been turned in toward her inner calf so she basically walks on her ankle her head has been stuck to her shoulder since last march....this Monday 02-13-12 her ARM twisted around clenching her hand shut left side of her face is pulling down and now she has to drag her bad foot/leg while I hold her up to walk I need help I don't know what to do I want to take her to the hospital but no one around here knows what to do for her they will just tell her she is stressed out and go see psycologist

 
Old 04-16-2012, 05:13 PM   #2
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Re: General Dystonia with spasmodic torticolis

It sounds like dystonia to me, but I am not a doctor. There are medications, botox injections, and other medical treatments to help. Sadly there is not a cure for dytonia.

I too have been told it's all "stress" related and my own brain is making this happen. When my onsets occurred, I was not under any stressful situations, nor was I holding on to unresolved issues from the past. They even tried telling me, it was the "stress" of raising two small children, well my dears, then you just summed up most parents with "stress" events that would lead them to medical conditions. When I was in ICU the neurologist team sent in the physiologist team to assist me, who then in return told the neuro team, it's not stress induced, it's neurological .

For me, they dumped me on my family doctor who witnessed my body twisted and shake. He placed me on Baclofen, which eases the issues. The neuromuscular center read my file and are having me looked at for dystonia, along with another neurologist whom came to the same theory. Tell your mom not to give up, to keep on pushing! I wish her all the best, and you are not alone!

Last edited by melandter; 04-16-2012 at 05:24 PM.

 
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Old 04-16-2012, 05:42 PM   #3
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Re: General Dystonia with spasmodic torticolis

She is currently taking baclophen, zanaflex, gabapentin, and botox shots..her nurse dont understand why she isnt a limp noodle by now but somehow her muscles just dont quit. We have a great dr now i found him on the st dystonia site we know there isnt a cure but we are hoping to get her back to somewhat normal so she can function and take care of daily tasks on her own which is impossible right now....i hope you get into a good dr soon so you can get on your road to finding some relief...how long have you had dystonia? What state are you from? I have another post on here that i chat on also if you want to join that conversation also..just click on my name and go to my other post and chat with lee and i.

Have a great day
amanda

 
Old 04-16-2012, 05:58 PM   #4
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Re: General Dystonia with spasmodic torticolis

I am glad to hear she is getting treatment and has a wonderful doctor!

I live in Southern CA. What brought this to our attention started the last week of Jan. However, once we started researching dystonia, there were things we read that brought light on other issues I have always had. We have a feeling this is a family gene that was passed down from my grandmothers family.

My eldest daughter who is 17, has had issues with tremors in her hands and now feet, plus she has "jimmy legs". I had taken her to one doctor after another before this happened to me. They just told her, "Well, you'll just have shaky hands".

In many ways, I am hoping they discover I have this and it's from our family tree. At least that way we would have a clear understanding of Katie and can get her tested.

 
Old 05-10-2012, 02:42 PM   #5
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Re: General Dystonia with spasmodic torticolis

Well, I found out that I have Paroxysmal Kinesigenic Choreoathetosis. PKD also known as PKC. Mine is in the dystonia category.

 
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