Thank you all for your questions. We have put as many as we could to neurologist Dr Marie-Helene Marion and filmed our Q+A. In this discussion we focused on focal dystonias and botulinimum toxin. You can see the video below:
Thank you to all those who submitted questions - unfortunately due to time restraints we have been unable to ask all the questions and we have grouped some questions together. We are going to do another Q&A in a couple of months with Professor Tom Warner focusing on generalised and other early-onset dystonias as well as the causes of dystonia and other treatments such as Deep Brain Stimulation. If you still have questions please do contact our Helpline on 0845 458 6322 or by emailing firstname.lastname@example.org
So that you can find individual questions easily, we have included the timings for each question below:
0.00 - Introduction
0.58 - What causes dystonia in adults? Can any vaccines, peripheral nerve damage, the menopause, surgery have any affect?
6.18 - Does dystonia spread? If so are there particular parts of the body it spreads to and from?
7.53 - How long do the symptoms carry on getting worse? (including info on whether dystonia ever goes away)
11.33 - I understand botulinum toxin is a type of poison? Is it safe?
13.34 - Can botulinum toxin be used during pregnancy?
15.15 - Is there a way to avoid side effects from botulinum toxin (such as pain at the injection site, swallowing difficulties, blurred vision)?
18.51 - How can I manage pain in dystonia if it is not managed by botulinum toxin? Is it ok to take pain medication long term?
20.35 - Why is botulinum toxin not working? Might this be because I am immune to the toxin?
28.46 - What should I do if botulinum toxin is not relieving dystonia tremor?
31.49 - Is artane (trihexyphenydyl) helpful? Is there an age limit for taking it?
36.46 - Can physiotherapy or mind retraining help?
29.08 Might diet or complementary therapies help to manage dystonia?