Quote:
Originally Posted by momto5
He has had all kinds of test, and all of them were negative (tests included MRI, MR Spectroscopy, lumbar puncture (spinal tap), head/neck CT, metabolic panel, various blood tests, and genetic tests for specific disorders). No positive tests to point us in the direction of a specific disorder. The only thing we know is that he responds to dopamine, which means he has dopa-responsive dystonia, Parkinson's, or a dystonia-Parkinson syndrome. Really, the only way to pinpoint which one it is would be to find an exact genetic match to a specific disorder. All of the main ones that fit his symptoms have been eliminated.
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I don't know how old your son is. but it are a lot of tests for a child. I know they are nessecary. I had most of the same tests and some others like, EMG, EEG, tremor registration, ect. I'm waiting now for the MR Spectroscopy.
If I read his story it's like reading mine. The only clue they have with me also is the postive reaction on dopamine. Sounds familiar...
You are the first person I have found who has (your son has) the same problem. I HOPE WE CAN KEEP CONTACT! Can you tell me more what his symtoms are? If I ask to much, just tell me.
08-01-2011, 01:24 AM
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