What's all this Dystonia thing about then?

[spackattack]

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

Comments

[rockchickdiva]

I'm sure to hear that your health hasn't improved. But it's good to hear that the Dr's now know whats wrong with you and they can give you the right treatment. I hope it works out for you.

The Dr's still don't know whats wrong with my hips and back. I'm now having problems with my shoulders and knees. I've had a muscle spasm in my left shoulder for 2 years now, which has caused my spine to curve.

I really do hope everything works out for you Fran.

Take care ♥

[spackattack]

Hey!
Thank you for the well wishes!
Hhmmm spasms that make your bones move sound like a dystonic posture..Mention it when you see your doctor next as its not widely known of.Maybe ask to be seen by a neurologist if you havn't already as it can have differing affects on different people.Ussually if you relax,ie:you don't have spasms,when your asleep thats a common thing with dystonia.(i just have a freaky severe varient heh)
Also mention baclofen (sp?!)the tablet cos its a pretty ideal muscle relaxant without having to take valium!

Hope the docs find out some stuff soon or at least get you seen by a pain specialist!

loves
x

[rockchickdiva]

Thanks for the advice. I will definately look into it.

♥

[gumchewingfreak]

Fran - Hey :o)

Its really nice to meet you!! Im guessing you got my name from the Neuro movments community? It would be really good to chat some time though, i dont know if you use MSN or anything. I dont know many people in the UK with dystonia, specially not the same age, with the same problems!!

Any way .. hey .. and its nice to meet you .. and i hope to talk to you soon!!

[spackattack]

Heylo :)

Aha yes sorry for just adding you out of nowhere.Saw you on the neuro movments thingme and added you cos you were around the same age and had hot glasses heheh!
I've just had a skim over your journal and it indeed does seem like we have the same probs and ive not met anyone in the uk with dystonia so this is highly exciting (how geeky!)plus i think some of my friends of friends know your girlfirend!!(I do athletics so yes..swimming and all that heh)
Hope to talk to you soon!
my msn is cabot_cometbus@hotmail.com and my email is cripple_core@yahoo.co.uk!

xx

[gumchewingfreak]

I cant believe you swim!! Im really suprised, mainly because i never thought a veriable disability like Dystonia would be able to swim .. i mean, some days im really loose and some days i can hardly move .. what class are you? Do you have to be re-classified every year? What are your times? are you any good!? So who do you know??
Be carful what you say, dont mean to be rude, i know me and Fran dont hide that were together online .. but i dont think she would want to swim team to know :-s .. but im still intreeg to know who you know!!

Im sorry we've not had a chance to catch each other on MSN, are you online much? I hang about online most of the day if im in .. im a sad muppet like that!!

Right, im off .. hope to see you soon x x x

Hey!

[spackattack]

Well I do athletics..Discus

[anonymous]

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[spackattack]

Fallllllooooooooon I love u
lets have a hot date soon!
please.
hahah I really hope this is you now!