Well, I told you all I would keep you updated. My official diagnosis is Dopamine Responsive Dystonia. The Neurologist came to this conclusion because of the violent nature of my movements, and lack of certain telltale signs with respect to other diseases such as Parkinson's.
He watched some file video of people with this condition, and although the condition is quite rare, and even more rare when developing in adults, also when such a condition does not run in my family, he is absolutely certain this is what I have. After doing some research on my own, I am confident he has reached the correct conclusion/diagnosis.
Many symptoms for people with Dystonia are similar to Parkinson's, but there are also distinct differences. So although I am happy to say I do not have Parkinson's, I have a close cousin, though a much rarer condition.
The condition will probably not progress into something worse, and, in a few rare instances, people have even recovered from it. My neurologist warned me not to be too hopeful about this going away though, because it usually doesn't.
Over the next several months, my Neurologist and I will work on refining my medication/medications for better control and hopefully restore my life to being somewhat normal.
At least now I have a name for this, and some idea on how we can proceed on treating it. I will drop in from time to time to see how everyone is doing, and I thank all of you for your support, encouragement, and advice.
Originally posted by Caring: Well, I told you all I would keep you updated. My official diagnosis is Dopamine Responsive Dystonia. The Neurologist came to this conclusion because of the violent nature of my movements, and lack of certain telltale signs with respect to other diseases such as Parkinson's.
He watched some file video of people with this condition, and although the condition is quite rare, and even more rare when developing in adults, also when such a condition does not run in my family, he is absolutely certain this is what I have. After doing some research on my own, I am confident he has reached the correct conclusion/diagnosis.
Many symptoms for people with Dystonia are similar to Parkinson's, but there are also distinct differences. So although I am happy to say I do not have Parkinson's, I have a close cousin, though a much rarer condition.
The condition will probably not progress into something worse, and, in a few rare instances, people have even recovered from it. My neurologist warned me not to be too hopeful about this going away though, because it usually doesn't.
Over the next several months, my Neurologist and I will work on refining my medication/medications for better control and hopefully restore my life to being somewhat normal.
At least now I have a name for this, and some idea on how we can proceed on treating it. I will drop in from time to time to see how everyone is doing, and I thank all of you for your support, encouragement, and advice.
At least you know what you're up against and can take some steps to take care of it. That's so important. Just knowing, I think, relieves your mind a little. Please let us know how you're doing and visit this board often. Who knows, maybe your condition could be one of those that will help find a cure for PD.
Thank you all so much. Well Googy, he still has me taking Sinemet generic, because we know it works. He offered to prescribe Sinemet CR instead, but I am concerned if the Dystonia acts up, that I will not be able to get the quick relief I do from Sinemet.
Not often, but sometimes, and I think it is a visual stimulation thing, when things are busy around me, or sometimes when listening to music or lots of noise, it seems to set them off. I could be having a great time, with my Dystonia the farthest from my mind, and suddenly I will start making faces--eye bulging, teeth clenching, neck torking or arm flapping, etc. But then I just take my dose early, and within less than half an hour, it calms down. I've heard that you can't get those results from Sinemet CR.
So the Neuro will have me use the Sinemet for a few months, and see if there is any progress, or if he needs to refine by adding any other medications. Adding on something to extend the effectiveness of the medication would be a good idea, because that way when the Dystonia acts up, I can still get quick relief with the Sinemet, yet have it last longer instead of wearing off too soon.
I may talk to him about doing this before our next appointment in a couple of months. I'll see how it's all coming along.
Will keep you all updated. Maybe we can find something interesting from all this. Take Care all, and thank you again.
Sincerely,
Caring
Official Diagnosis, Not Parkinson's 
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