I just got diagnosed with dystonia. D... - Functional Neurol...

Functional Neurological Disorder - FND Hope
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I just got diagnosed with dystonia. Does that mean I don't have FND?

Jesdue
Jesdue

Yeah so my Dr diagnosed dystonia and I'm going to a movement disorder specialist later this month. I think dystonia explains my symptoms of weakness and movements (they thought were seizures.) They thought it was psychogenic but have now apparently decided it's dystonia. I'm confused about this. Can you have both dystonia and FND?

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Hi,

If the dystonia is not caused by organic disease (ie. brain damage or disease) then, yes you have FND. FND is not a psychogenic condition. It's a problems with signalling in the brain. If you are in the UK I'd ask for a referral for one of the specialists on the FND Hope UK web page.

There are many doctors who think that they understand FND, but they don't. They are just calling it by the new term and then treating people wrongly and dismissively and they could make your condition worse.

If you are in the South East of England then Prof Mark Edwards at St Georges is the one you need. There are others listed on the website. If you are elsewhere in the world then I'm afraid the list is a lot shorter. There is a clinical trial for the FND physiotherapy at St Georges, but they will only take newly diagnosed. They don't do in-patient physio course for people with fatigue.The physio treatment is also available at UCLH in London with a about a year long waiting list.

You do have a chance of recovery from FND. If it does turnout that you do remember you are not alone.

xx

I too have dystonia. But don’t be surprised if you don’t fit in their perfect box of what your dystopia should look like. I believe FMD or FND are both movement disorders just not diagnosed yet cause we don’t fit in their boxes. Please keep us updated. God bless, Cathy

It's possible to have both organic dystonia and FND. You can also have functional dystonia, which differs from organic dystonia in that it is painful, particularly when the dystonic body part are stretched out. In functional dystonia, the patient tends to resist someone else stretching out the dystonic body parts, probably because of pain.

Also my father has dystonia I might have the genetic kind.

I did an eeg at the hospital in August and they told me I have Tourette's but primary care says dystonia but he said maybe you can have both Tourette's and dystonia and I have no idea how that FND diagnosis I got from the hospital back in June plays into this but I'm seeing a movement disorder specialist Sep 17 I hope she can set me straight. The nuero was saying it was a psych thing and I had to have my psychiatrist treat it but it seems getting the Tourette's diagnosis changed their mind about that. Psychiatrist keeps saying it has to be treated by nuero. I don't know, this is all very confusing. The specialist I'm seeing is at Georgetown and it says online she treats Tourette's.

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