What's all this Dystonia thing about then?
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) is great :)
Dystonia(my kind-primary susitained focal, genralized task and rest dystonia-non idiopathic)in lay man terms it is my brain sending the wrong signals to my body making certain muscle groups to contort in a spasm type thing,which makes my body move into weird postures.
Like the reason I can't walk is because my feet are pontied 180 degress down and turn in toward each other (like tommy off the rugrats cartoon!)
Even if I push my feet with a splint etc.. will not make them move to anyother position than the oen they are in..hence resulting in me not being able to use them which leads to muscle wastage.
From the doctors tests and observations(I'm still awaiting results on a genetic falw test at the minute.)they can see dystonia in my legs,arms,hands,lumbar spine and neck..all of which will progress as I get older and new symptoms may appear.
At the minute I can't walk,my hands spordically form a fist and refuse to move out of it for a while,I can't move my neck from side to side(turning my head)and spordically my back gets spasms so i get stuck either leaning really far back or leant onto my knees.Which hurts quite abit when I get the sporadic ones but is just a constant dull ache on my sustained ones!
Even though the doctors still seem to think that my Dystonia is a result of some kind of gene disfunction and that It's a pretty sereve case there are
also a ton of treaments for it!
I'm on a medication called Simemet which is used in the treatment of Parkinsons disease as its a similar type of brain damage thing as that(the medicine adjusts the amount of dopamine I get so makes me a little depressed and sick,so sorry if I'm mean)!
They also giving me some new crazy painkillers which I think I will like a little too much and a thing so I can do buttons and zips when my hands go bad on monday YEY!
I'm getting injections to dull down my spasms in my legs which really stops them hurting like 70%!I also go to physiotherapy once a week(even though it did make me worse last week after I had traction on my neck-little weights used to strech my spinal cord and muscles out of a spasm but it enraged mine and sent my right arm crazy)
I'm also getting seen by three top neuroloigists(which provides the confusion on what to call someone with the title professer..it sounds silly saying hello proffesor*answers on a postcard if you know please*) which is nice!
There is talk of Brain surgery at the minute which can make a great improvement on my hands,neck,back but it's unlikely it will improve my legs as the bones are really damaged now plus my wheelchair is cute and cost a fortune so I'm not going to part with it now!With all brain surgery there is a big risk so I'm trying to ignore this right now!
So yep here it is then...Sorry if this is an odd way for me to tell people about it all but when I'm talking I don't make much sense and it's easier to just send people here!
Thanks :)
Fran
x
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) is great :)
Dystonia(my kind-primary susitained focal, genralized task and rest dystonia-non idiopathic)in lay man terms it is my brain sending the wrong signals to my body making certain muscle groups to contort in a spasm type thing,which makes my body move into weird postures.
Like the reason I can't walk is because my feet are pontied 180 degress down and turn in toward each other (like tommy off the rugrats cartoon!)
Even if I push my feet with a splint etc.. will not make them move to anyother position than the oen they are in..hence resulting in me not being able to use them which leads to muscle wastage.
From the doctors tests and observations(I'm still awaiting results on a genetic falw test at the minute.)they can see dystonia in my legs,arms,hands,lumbar spine and neck..all of which will progress as I get older and new symptoms may appear.
At the minute I can't walk,my hands spordically form a fist and refuse to move out of it for a while,I can't move my neck from side to side(turning my head)and spordically my back gets spasms so i get stuck either leaning really far back or leant onto my knees.Which hurts quite abit when I get the sporadic ones but is just a constant dull ache on my sustained ones!
Even though the doctors still seem to think that my Dystonia is a result of some kind of gene disfunction and that It's a pretty sereve case there are
also a ton of treaments for it!
I'm on a medication called Simemet which is used in the treatment of Parkinsons disease as its a similar type of brain damage thing as that(the medicine adjusts the amount of dopamine I get so makes me a little depressed and sick,so sorry if I'm mean)!
They also giving me some new crazy painkillers which I think I will like a little too much and a thing so I can do buttons and zips when my hands go bad on monday YEY!
I'm getting injections to dull down my spasms in my legs which really stops them hurting like 70%!I also go to physiotherapy once a week(even though it did make me worse last week after I had traction on my neck-little weights used to strech my spinal cord and muscles out of a spasm but it enraged mine and sent my right arm crazy)
I'm also getting seen by three top neuroloigists(which provides the confusion on what to call someone with the title professer..it sounds silly saying hello proffesor*answers on a postcard if you know please*) which is nice!
There is talk of Brain surgery at the minute which can make a great improvement on my hands,neck,back but it's unlikely it will improve my legs as the bones are really damaged now plus my wheelchair is cute and cost a fortune so I'm not going to part with it now!With all brain surgery there is a big risk so I'm trying to ignore this right now!
So yep here it is then...Sorry if this is an odd way for me to tell people about it all but when I'm talking I don't make much sense and it's easier to just send people here!
Thanks :)
Fran
x