Dystonia?

[Joanne1974]

Finally getting answers to the symptoms I have been experiencing for over two years. Symptoms include: contorting of the hands, arms, and legs, teeth grinding, teeth clenching, twitch in my left shoulder, head bobbing, and extreme mood swings to name a few. I've had numerous tests performed and have been seen by two movement specialists and have finally been diagnosed with Dystonia due to a lifetime of Hydrocephalus. Does anyone here have Dystonia? What are your symptoms and how are you dealing with your situation. Having a difficult time. Unsure where to go from here. I have been put on an antianxiety pill and Baclofen for my movement problems. I have put on a considerable amount of weight and that in itself is depressing. I am a factory worker and my work is getting more difficult. Any suggestions?

Thanks for your listening.
Joanne

[DystoniaGal]

Joanne
I have dystonia and hydrocephalus. My hydrocephalus was caused by an infection that went to my brain from deep brain stimulation surgery. I have never really heard of hydro causing dystonia. Have you had any trauma to your brain from the hydrocephalus. Where do you live? There a lot of different options out there for dystonia.
Suzie

[Joanne1974]

Thank you for responding back. Still trying to deal with this diagnosis. I live in New Carlisle Ohio.

[Austinsmom]

Hi,

My Son and Daughter have dystonia...
I am no doctor, this is just what's gone on in my family.....
My son has hydro and has 2 shunts and has had many revisions, his Dystonia symptoms started with head bobbing, I use to come here and ask everyone, no one but Austin had this head bobbing, Austin’s toes and feet curling seemingly happened in late afternoons with good or bad stress making him have head bobbing, once in a while he went mute, he would rhythmically bob his head on the bed laying down and at times sitting, this went to toes and foot contortions and then his legs would go out on him, not able to walk... brief resting would always seem to help, but these symptoms got worse over about 5 or 6 months;my son seems to have a host of conditions but this part; the dystonia, was helped by realizing he had low dopamine, which i was told causes the head bob, but with all his hydro issues; it took a sharp and hard to find neurologist to figure all this out... so if you talk with a neurologist ask about if you too might have low dopamine. Dopamine can have side effects, but we could tell it helped my son in 1 weeks time, he still has brief episodic but rare. Austin has Seizures, Hydro, DRD dystonia, and tics; he and his sister have a form of a neuro-genetic disorder… so do not let everyone think everything is always hydro, sometimes hydro is just one neuro problem
Hope this helps and is understandable
Deborah

[DystoniaGal]

You may want to try and get to Cleveland Clinic and see a movement disorders specialist.

[Joanne1974]

You may want to try and get to Cleveland Clinic and see a movement disorders specialist.

Thank you for responding. I have been to several specialists. One of the specialists was at The Cleveland Clinic. I also have been to The Mayfield Clinic and Ohio State. A doctor at Ohio State diagnosed me with Dystonia with myoclonic jerkings. I still have not yet discovered why and how I developed it. Recently, I was going through my journals that I have been writing in over the past 10 years or so, and might have an idea of how my disorder started. My symptoms seemed to have developed after I had the H1N1 vaccine. I collapsed four days after the vaccine. My hands began to contort and my legs began to jerk out to the side not long after. It has progressively gotten worse over the past couple of years. I cannot say for sure if this is what caused my symptoms, but I am not ruling it out. I have not discussed this with a doctor, but plan on discussing it tomorrow with a specialist at Good Samaritan Hospital in Dayton.

Thanks for listening.

Joanne