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  • diagnosis-symptoms-faqs
  1. Help and support
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  3. Diagnosis and symptoms FAQs

Diagnosis and symptoms FAQs

What is dystonia?

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What is dystonia infographic

Published: 1st June, 2021

Updated: 1st February, 2022

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What should I do if I think I have dystonia?

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If you think you may have dystonia, it is always best to discuss this with your GP. 

If necessary, they will refer you to a neurologist specialising in movement disorders, an ophthalmologist, or ear, nose, and throat specialist depending on your suspected type of dystonia.

Published: 2nd June, 2021

Updated: 12th July, 2021

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Do I have dystonia?

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Only a medical professional can confirm if you have dystonia. If you think you may have dystonia it is always best to discuss these concerns with your GP. 

The team at Dystonia UK are not medically qualified to diagnose dystonia.

Published: 3rd June, 2021

Updated: 5th August, 2021

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I think I have dystonia, but I am struggling to get a diagnosis, what can I do?

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It can sometimes take a long time to get a diagnosis as the symptoms of dystonia can be similar to those of other conditions, and it is often a question of ruling these out first before arriving at a diagnosis.

To help you can:

  • show your GP the pages from our website that feature the same symptoms you are experiencing
  • ask your GP if you can be referred to a hospital that diagnoses and treats dystonia
  • ask for a second opinion at your GP practice
  • if possible, contact a private practitioner specialising in movement disorders and enquire whether they will see you

Published: 4th June, 2021

Updated: 12th July, 2021

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How can I find out which UK hospitals or clinics near me diagnose dystonia?

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  • Head to our treatment centres page.
  • Use the map of services on the website run by the British Neurotoxin Network.

Published: 5th June, 2021

Updated: 12th July, 2021

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How can I find a private practitioner?

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You (or someone on your behalf) can search online using the following suggested search terms:

  • Private neurologist dystonia (+ your geographical location, e.g. Bristol)
  • Private movement disorder specialist (+ your geographical location)
  • Private movement disorder specialist (+ the type of treatment you are seeking, e.g. botulinum toxin for dystonia + your geographical location)

Once you have found some possibilities, we recommend calling them to find out more about the practitioner's specific knowledge of dystonia, and to check the cost of an initial consultation, tests and follow ups.

Published: 6th June, 2021

Updated: 12th July, 2021

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