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molly_m

Dystonia question

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Hello, I am wondering is there is a part of Dystonia/Parkinson's Disease where it is possible to stop functioning all together for a brief period of time. I know about freezing, and have heard of Dystonia storms, but what I experience is really just stopping moving, and staring, and although I'm totally conscious, I find it very hard to move or speak. Generally, people know I am having an episode, by the fact that I have suddenly become very quiet. I feel extremely weak, and unable to walk, or even lift my arms. Apparently my facial expression changes also. If I am standing, I feel like immediately laying down or sitting, because I become very unstable, and on occasion have fallen over. Generally, I have just enough warning to know to sit or lay down. If I don't, and someone has to help me, my foot does not pick up and it's as if my right side especially is not working at all. If I am sitting when it happens, I tend to slump to the right, and will just fall over over time. Generally they don't last very long, and sometimes my Dystonia symptoms (obvious ones, in my arm or hand) will kick in. I have also had my head turn chin to shoulder and sort of stick there when this happens. I sometimes feel very cold when I'm just laying there. I do recover within 10 mins to 45 mins - but feel weak and often headachy after. I usually have to sleep it off. Exertion will really bring this on. But I have had it happen for no reason that I can tell also. I was tested for seizures and although I did not have a true episode while hooked up, they did not see any signs of epilepsy. I've had MRIs, cat scans, etc. One neurologist felt it could be vascular (like a faint or a type of migraine). Again, not really tested for faints - my vision does get funny, but I'm not sure if that's because I am staring (not blinking), but it becomes a bit tunnel like/blurry/grey. I sometimes feel cold to the touch (my hands) when I have them. I am not sure why I can't speak when I have them (and that usually happens only with bad/more severe ones). It's as if I just can't get my mouth to function. Other times I have a problem getting the words out. I tend to feel better once I'm laying down (and I tend to recover more quickly if I lay rather than sit). Generally, my speech will come back within minutes if I lay down. My body tends to take a bit longer. It's definitely worse on my right side, however, all my symtoms are worse on my right side (where it all began). Three neurologists and my physician have said Dystonia - and some have suggested I have signs of Parkinson's (my mother has Parkinson's), but I have never understood the 'episodes' and what these could be. Any thoughts would be appreciated. Thank you

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These types of episodes with loss of awareness, slumping, etc. suggest a need for epilepsy monitoring as the episodes could be seizures. You could have both seizures and also dystonia/parkinsonism.

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The Dystonia for me just started in my hands.  The fingers all fold in and does it hurt.  So I am to understand that I need to let me Neuro or PC know and get set up for epilepsy monitoring?  It is very scary to my Grandchildren has they watch my fingers and hands start turning in.  Goes right up the arm to mid wrist and turns. :evil: Would appreciate your thoughts?

 

Jaxs 1949

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Hard to know without seeing you, but definitely worth a discussion about dystonia and epilepsy and treatments with your doc.

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