Comments | spackattack: What's all this Dystonia thing about then?

spackattack

What's all this Dystonia thing about then?

May 13, 2005 17:24

Warning:Explination of my bizarre body,only read if you're really that bored or I was to drunk to explain to you at the time why I'm 'special' hahah!So yes to be fair..After waiting 20 years to find out what was wrong with me some kind of diagnosis is a relief and the fact that the illness is rarely fatal(only ever develops from complications of it ( Read more... )

Comments 21

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MERRYDOWN! spackattack May 14 2005, 19:33:10 UTC

Hahah Ignore my ramblings,I was just sick of explaining to people why I've not been around for ages and them getting confused cos of my whole being in a wheelchair since I was five and now losing other stuff haha..Basically it was just out of pure laziness hah!

Are you coming to the JapFest thing at the sage next weekend?
I'm going to hospital on Monday but if all is well I will be there with bells on :)

xx

Dystonia angelslullaby83 May 14 2005, 04:06:02 UTC

Hi, I'm Nicole. I'm 21 years old and have had dystonia for a little over two years now. I'm on a ton of meds and get botox injections to calm my muscles down. Feel free to check out and join my LJ support group: neuromovements. There are quite a few people with dystonia there who would be interested in chatting with you. Also feel free to contact me - my e-mail and AIM SN are on my userinfo page.

Good luck.

Nicole :o)

Re: Dystonia spackattack May 14 2005, 19:40:13 UTC

Hey!
I'm Fran!
Nice to meet you :)

I'm not really sure what this whole dystonia thing is as the doctors always thought from the day I was born that I had skeletal deformities and nothing else.
But only when I was 15 was I refered to Neurology for tests as i was progessively getting worse and now I'm 20 the doctors are saying I have genralised dystonia(from around 9 years old!)but maybe with another underlying condition as all my leg contractures are sustained(even when Im asleep!)and I have muscle wasting and balance problems!

So hope I'm still cool to join!
Thanks for getting in touch!
I added you as a friend,hope thats ok!

Fran
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0utlawt0rn May 14 2005, 12:50:50 UTC

"the fact that the illness is rarely fatal"

that's really awesome fran, i'm glad you're at least gonna be around and stuff :)

Cev! spackattack May 14 2005, 19:44:25 UTC

Aye I know it's a far cry from the whole "you may die" thingme of last year indeed! :) :) :)

I'm still waiting test results to find out whats causing my dystiona at the minute as the doctors think its the cause of a gene flaw or something..But yeah class!!

It was class to see you last night at the gig in your colourful shirt ;)

x

exsilvique May 15 2005, 10:52:51 UTC

Nice to have you back baby! I''m so glad you kept going for tests even though you were scared; the news isn't all bad and I'm so glad they have figured you out a bit and can give you some help.

Anyway, thanks for keeping us updated on the doc stuff, ross will be glad too, we were worried. Now bring on the pisshead/gig entries!

Ello Danni! spackattack May 15 2005, 22:03:18 UTC

Aw thank you for the Lovely words!
I hope all is well with you!
And Leo and Ross of course!

I hope to see you soon and add a pisshead entry of how I saw Danni and how it was fun,yes please!

x

lizzibeff May 15 2005, 13:07:05 UTC

aha! I just checked my user info for no apparent reason and there you are on my friend-of list.

hello!

Hope you are weellll.

Lizz! spackattack May 15 2005, 22:04:02 UTC

Hello!!!
How are you thank you so much for the add back :)
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