dopa responsive dystonia


Posted by pat ® , Jan 16,2001,10:01   Archive
Can anyone help us understand if dopa responsive dystonia can also be more generalised? ie effecting cranial nerves,speech,and various muscule pain in other parts of the body.
I have responded brilliantly to low dose madopar and in 31 hours was basically transformed from an almost wheelchair bound person to one that can walk perfectly normally (although still get tired and have muscule pain in arms and legs).
I have only been on the medication for 11 days and would like to know if,when the dosage is right,will all of these other pains go and a slight left sided weakness.
I would also like to know if this is definately the genetic kind and if gene testing will help the rest of my family?Does anyone know the long term prognosis for DRD and,if it is more generalised,would other treatments be involved?
It has also taken me to 44 years old before a diagnosis has been made and Iam worried about my 2 teenage daughters.Does anyone else also get severe headaches with their dystonias?I would be very gratefull for any input.
You can contact me either through this notice board or e.mail me direct at andersonjoseph@lycos.com.
Thankyou Pat.



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Re: dopa responsive dystonia

Re : dopa responsive dystonia --- pat
Posted by David Barton (NZ) ® (Moderator1,David Barton (NZ)), Jan 16,2001,16:00 Top of Thread Archive
Hello Pat - welcome to this bulletin board.

You might want to also post your question to the main DMRF dystonia bulletin board - the url is http://www.dystonia-bb.org/forums/asd/

You'll probably get more response on that board (which covers dystonia generally) (and reach a wider audience?) than posting on this one which focuses mainly on SD = spasmodic dysphonia which is one form of focal dystonia. SD is laryngeal dystonia, and affects the voice.

Good luck in your search for answers.

David




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