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Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 12/20/2008 6:00 AM (GMT -7)   
:-) Hi Poppy,

Welcome!

You are the first person who has posted who has Dystonia. It's also called Cervical
Dystonia and Torticollis. It's a difficult health problem to deal with.

Sometimes the Dystonias are very obvious and sometimes there is just a slight
tilt to the head. Very few doctors know to diagnose it unless it very obvious.

It's rare. It's like one in a million who suffers from this particular problem. The
best medication that I know of is Botox. The problem with Botox is two fold 1)
It costs a lot of money and insurance rarely pays for it. 2) Doctors are not familiar
with treating it and sometimes put the Botox in the wrong muscle and the poor
patient cannot hold his/her head up for about three months.

How did you get your diagnosis? What kind of doctor diagnosed it? I know there is
a place in California where they treat Cervical Dystonia but I'm in too much pain
to travel that far.

Do you say what state you live in?

I'd appreciate any information you could give me about this terrible problem.

Pamela Neckpain

I will gladly accept private mail from you. :-)
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