Dystonia...Anyone Suffer With It?

[Trish]

Hiya

I have been diagnosed with a form of Dystonia. Obviously I'm stressed and i could really do with chatting to someone who knows what I'm going through, even though there are many forms of Dystonia, I would be grateful to hear from you.

Thanks

Trish x

[nomorepanic]

What is it Trish?

[Trish]

Hi Nic

It's a Neurological problem. The brain sends the wrong messages to the muscles causing them to contract.

I have suffered for almost 7 years with spasms in my hands, feet and trunk, they are very painful. Now i have it in my vocal cords as well, but no pain there thank goodness:weep:

I have what they call Kinesogenic Dyskinesia (trust me to have something I can't prononce!) which comes under the Dystonia umbrella.

There are many other types of Dystonia Nic, some a lot worse than me:weep:

Trish x

[nomorepanic]

OK thanks for explaining Trish - never heard of it before.

[Trish]

Your welcome Nic x

Trish x

[Elle-Kay]

I know from when I used to work in a complementary health clinic that there is a Dystonia Society, which should be online. The lady I knew with it found that Botox injections helped, I think...?

[Trish]

Hi Elle

I'm in contact with the Dystonia Society they are very good, it's just it would be nice to talk with someone to find out how they cope etc. The forum on the DS site is not used a great deal, where as here it's much busier.

Thanks for your reply:)

Trish x

[spacebunnyx]

Hi Trish,

I've not got what you've got but I had a severe whole-body dystonic reaction to some medication. It was horrible and out of the blue... started to have panic attacks after it. I hope you find someone to talk through this with. Must be exhausting and very painful.

xxx

[Trish]

Thank you Space. I'm sorry to hear about your Dystonic reaction, it must have been really frightening for you, hope you never have one again.

Trish x