Dystonia

[livingwith]

I have been experiencing several symptoms been to neurologist think may be dystonia.
It all started April 2007 I had attack of severe pulling on left side of face slurred speech numbness to touch was told bell’s palsy. The symptoms continued mild to moderate was referred to neurologist. Symptoms progressed to when reading out loud face muscles pull and neck muscles spasm.the more read the more words not formed slurred.
Since june 2008 legs get very heavy when walking the further the dista...Read the full article

[saholley73]

Hello. I just wanted to let you know that your story is pretty much my story so far. Still waiting for the blood tests to come back. Feel like I have been passed from doctor to doctor. Feel like I'm getting lost in all the patients and paperwork. Very frustrated and scared and making lots of bad jokes to my friends and family to cover it up. Everything you wrote is exactly where my symptoms are at and how they started. I just wanted to let you know that. I am trying to do my day to day routine and doing a little extra with my kids (little bit extra that I should be doing anyways) and playing the hurry up and wait game with the system. Thank you for sharing. It feels really like I am writing to a journal. Just getting it out on the screen helps. And you sharing your story encouraged me to do that much. Thank you.

[blueseeker5]

Does it ever get any better?

I am 22 years old. I have had symptoms since I was about 12. Over the years it has worsened for me. It does not effect me everyday, somedays it happens 0 times others it might happen 7 or 8 times. When I wake up in the morning and I usually know right away if it's one of those days. I can kinda tell when the possibility is there for it to happen. If its one of those days I am very, very likely to have at least a few instances. Other times I wake up feel completely normal and am fine all day.
It usually effects the entire right side of my body. It might happen when I'm sitting down and get up to move or standing still and start to walk. Some times it feels like it happens because just a certain muscle moved the wrong way, it can happen if I get nervous too.
My neck tightens, my head tilts, my eyes are usually forced to look up and to the right. My jaw opens, my hand curls, my toes curl and foot muscles tighten. I pretty much can't do anything for those few seconds. I am very embarassed when it happens in public I can usually turn away from people if I feel it start to happen. Sometimes I can play it off as a powerful yawn. I hate it when it happens in public, it makes me very angry that I loose that control over my body. It usually only last about 5 seconds when it happens, I think. It's not like I can time it when it happens but, I know it doesn't last long. The biggest issue I have is it happens a lot more when I'm nervous. I'm still in college right now and I get so nervous when I'm called on to get up infront of the class that it usually happens. So because I know it might happen if I'm called on I get even more nervous and tense. I usually stay that way durning every class from beginning to end. I don't want anyone to see me when it happens. I wish I could instantly turn invisible when it starts to happen so I could know for sure that no one will see me. Probably the worst time it happened was when I was driving about 2 years ago. My entire right side started freezing up and my head twisted and tilted up. I was able to use my left hand and keep it on the wheel and I had to just force my right foot off the gas pedal and just try and steer the car straight until it was over. That was no fun at all.

I just yesterday started taking a medication for it. My doctor gave me a low dose of Tegretol. I have read a little about the medicine and I'm very scared to continue to take it for a long period of time. I don't know what will happen next for me.