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Hi Wayne
as you can see from previous posts I have Cervical Dystonia and Dysphonia and after getting antibodies from long term botox I had dbs surgery which has basically given me my life back my daughter has also developed writers cramp and dystonia in her jaw and shoulder
we are all fighting this terrible condition but everyone is there for you
where do you live as we do have catch ups and if one is near you we would love to meet up with you
since having this condition I have met up with some wonderful friends that share this condition who I now class as friends for life
done stay isolated as there many avenues to talk and meet up
RobynRos I was also part of that research program and my daughter and myself get our results on the 18th April just hoping they have found the gene
Hi everyone I have introduced myself previously
I will be part of the admin for the forum is there anything you would like to see on the forum that would be helpful
Robynyes Louise we will have to get the others to come on here and introduce themselves.
when I was first diagnosed I had two small children so know what you mean about racing around and crashing in a heap.
Hi I’m Robyn and I have cervical dystonia and dysphonia and I’ve had DBS surgery
I was first disgnosed with CD 28 1/2 years ago the first gp I saw diagnosed me so I was lucky
I had dbs surgery nearly 6 years ago and it has given me my life back
I developed dysphonia about 3 years ago and I’m having botox for that
I’m not on any other dystonia medication
to see my history you can look on the stories
I am the treasurer of this group -
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