Dystonia Support Group
Dystonia (literally, "abnormal muscle tone") is a generic term used to describe a neurological movement disorder involving involuntary, sustained muscle contractions. Dystonia may affect muscles throughout the body, in certain parts of the body, or may be confined to particular muscles or muscle groups.
Hi all,
I have a question, some advice and or dicussion would be highly appreciated!
One of my best friends has a nurological movement disorder. Her nurologist can't narrow it down...I think this has something to do with the type of testing isn't around or accurate or something...
Either way, they think she has either Dystonia or early onset of parkinsons, personally I don't think it's early on set I think it's full blown.
She is 26 years old.. she's had trouble every since she was a teenager she said but in the last 6 or so years it has been worsening i've seen a huge change in the last year I've known her.
They have her on medication for Parkinsons which is helping her alot.. but now I think she's either getting use to or something as traits are starting to show again..if she doesn't have the medication she can barely function.
Some of her symptoms are;
* EXTREMELY dry skin,
* Her muscles clench up, they're so tight she can't straighten her fingers or her toes and her bones in her toes have sort of re-set she has permenate bumps on the joint areas, her calces are extremely cleched and tight too.
*She can't stand still, if she stand up straight she ends up falling over just standing still, this becomes an issue say when she cuts up vegtables some one else ends up doing it.. she'll stumble every time she cuts because it chucks her balance off so badly.
* she can't sit still either she does the same thing,
* she cant hold her fingers or arms our straight she shakes them uncontrolably, there's no way she can bring over a drink or cup of tea it ends up everywhere.
*she clenches her teeth,
* she can't walk very well, one of her feet sieze up badly and it drags along, and she walks oddly sort of like it's a real effort and I suppose it is for her with her body so tensed.
So while her medication is helping her, if she doesn't take it she can't function and it's evident if she misses 1 of her 3 pills daily you notice it!! But I am noticing her medication wearing off I suppose, it use to almost fix this stuff up completely, now it is putting her back to mediocre even she is noticing it...she goes back in January to the nuero so I am sure they'll re-assess her.
Firstly does anyone have either of this conditions and if so do her symptoms ring a bell?
Secondly, her clenching causing her so much pain, besides hot baths and heat do you have any idea of things to help her pain? Or even things she should avoid? The doctors told her alcohol would help her body relax...but any do's or don'ts to help with pain? I'd really like to be able to help her...I feel so sorry for her :( Her and her fiance soon to be husband next year are going to be trying for children almost straight away...purely for the fact she's getting worse so quickly.. she's worried she'll end up on a wheelchair..and really if she keeps going she probably will =/
Any tips or experiences, help advice, anything would be so appreciated...I'd just like to be able to help, make things easier for her.
Sorry for the LONG post,
thanks in advance for any help!
I have a question, some advice and or dicussion would be highly appreciated!
One of my best friends has a nurological movement disorder. Her nurologist can't narrow it down...I think this has something to do with the type of testing isn't around or accurate or something...
Either way, they think she has either Dystonia or early onset of parkinsons, personally I don't think it's early on set I think it's full blown.
She is 26 years old.. she's had trouble every since she was a teenager she said but in the last 6 or so years it has been worsening i've seen a huge change in the last year I've known her.
They have her on medication for Parkinsons which is helping her alot.. but now I think she's either getting use to or something as traits are starting to show again..if she doesn't have the medication she can barely function.
Some of her symptoms are;
* EXTREMELY dry skin,
* Her muscles clench up, they're so tight she can't straighten her fingers or her toes and her bones in her toes have sort of re-set she has permenate bumps on the joint areas, her calces are extremely cleched and tight too.
*She can't stand still, if she stand up straight she ends up falling over just standing still, this becomes an issue say when she cuts up vegtables some one else ends up doing it.. she'll stumble every time she cuts because it chucks her balance off so badly.
* she can't sit still either she does the same thing,
* she cant hold her fingers or arms our straight she shakes them uncontrolably, there's no way she can bring over a drink or cup of tea it ends up everywhere.
*she clenches her teeth,
* she can't walk very well, one of her feet sieze up badly and it drags along, and she walks oddly sort of like it's a real effort and I suppose it is for her with her body so tensed.
So while her medication is helping her, if she doesn't take it she can't function and it's evident if she misses 1 of her 3 pills daily you notice it!! But I am noticing her medication wearing off I suppose, it use to almost fix this stuff up completely, now it is putting her back to mediocre even she is noticing it...she goes back in January to the nuero so I am sure they'll re-assess her.
Firstly does anyone have either of this conditions and if so do her symptoms ring a bell?
Secondly, her clenching causing her so much pain, besides hot baths and heat do you have any idea of things to help her pain? Or even things she should avoid? The doctors told her alcohol would help her body relax...but any do's or don'ts to help with pain? I'd really like to be able to help her...I feel so sorry for her :( Her and her fiance soon to be husband next year are going to be trying for children almost straight away...purely for the fact she's getting worse so quickly.. she's worried she'll end up on a wheelchair..and really if she keeps going she probably will =/
Any tips or experiences, help advice, anything would be so appreciated...I'd just like to be able to help, make things easier for her.
Sorry for the LONG post,
thanks in advance for any help!
-
" Name A Term Used In Football " ?
I Tried Botox, Got Little Or No Relief..
My Dystonia Only Affects My Shoulders and Neck..
To Me Your Friend's Condition Does Not Sound Like Dystonia To Me..
But I Am NO Expert !
I Do Take Valium, For The Pain It Relaxes The Muscles..
I Also Had 8 Major Surgeries @ UCLA..
Feel Free, To Send Me ANY Messages..
Love Ya, Barbara
She goes back in January for a reivew they are going to try and work more out then based on her reaction to medications. Currently since she is reacting to medication for parkinsons so well they are leaning more towards it being parkinsons. It's more her age that made them think it could be dystonia. So really it's either or at the moment. When I know more I'll keep you updated :) Thanks for the ideas and I'll be sure to message you if I have any queries :D
As Tate mentioned the Neurologist at Monash Clayton first suspected I had Dystonia from my symptons, Myoclonic Dystonia to be accurate, as a trial I was put on a medication called Levodopa/Carbodopa to contol the tremors which I later found out was medication used for Parkinsons. The medication worked so well that he is now considering Early Onset or Juvenile Parkinson's. I must be a mystery because I have been a case study where a room of Neurologists analysed me. I haven't seen the Neurologist for roughly 6months but continue taking medication and I have started a journal as I previously wasn't paying that much attention to my symptons. I believe the reason I haven't been given a diagnosis because they want to be 100% sure. I would love to hear about other peoples experiences with this condition and how they deal with it, I would like to go to my next appointment full of knowledge and there might be things I'm missing which could help with a diagnosis. Thank you
P.S Sorry about the long post too
tests will confirm or rule out here in two weeks.
they wanna start me on levadopa to see if i improve.
i thought i had early onset parkinsons before the doc suggested dystonia.
i hope they can find a treatment to minimize her symtoms
your a good friend for being here to learn about your friend!