The Rare Dystonias- do you have one ?

I am writing this post in remembrance of Teresa Duffy. I met her back in 2001 here in NYC before she moved to Texas. Rare forms of dystonia have been presented lightly in research. But, in reality I wonder if more exist ? Diaphragmatic Dystonia ? Truncal Dystonia ? Respiratory Muscle Involvement ? Lingual dystonia ? Other forms ???

Share, Talk, Explain, Teach, Educate, Vent about this rare topic.
beka

Tags: buccal, cyclizine, diaphragm, drug-induced, dystonia, hyperactivity, laryngeal, lingual, neurology, rare

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Permalink Reply by beka on October 31, 2008 at 6:14am: Speaking of Respiratory Dystonia - Teresa had this. I also have heard of another womean out in CA with the same form - but has a tracheaostomy to help her breathe...

Let's not get overwhelmed about rareness... One step at a time for all...

beka; ▶ Reply to This

Permalink Reply by beka on November 5, 2008 at 11:25am: At this point, should dystonia even be called a RARE DISORDER today ???

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Permalink Reply by Thorns on November 7, 2008 at 12:44am: There's a clinic in Germany that test's for other gene's related to dystonia, Toronto has sent my brothers blood to be tested there, he has general dystonia. He was already been tested for the DYT1 gene which he does'nt have but because of our family history with dystonia the doctor's wanted to see if he had any of the other gene's and they are talking about testing our family too. Thorns; ▶ Reply to This

Permalink Reply by beka on July 20, 2009 at 3:33pm: If you go to the www.athenadiagnostics.com site you will find other dystonia genes that can be tested for...

beka; ▶ Reply to This

Permalink Reply by Jenn on July 21, 2009 at 12:52am: ahhh Athena.. my Doc told me there's another lab testing for dyt11 now... She didnt give the name because I don't have the money for it. but Athena does offer sliding fee for those with Medicaid/Medicare or no insurance.. can have DYT1 tested for as little as $200... but I segway :(; ▶ Reply to This

Permalink Reply by FelicityNexus on July 27, 2009 at 12:35pm: could you have the trouble to get oxygen to breath if your trachea is injured and out of alighment and a swollen bilateral thyroid ( with the blood test for thyroid normal) howerver the thyroid gets bigger and bigger until it finally inside has a loud noise and blood comes out of your nose and the swelling goes down , this when it happend caused alot of anxitey for me to not be able to get air to breath , The one nero said i was just having a nervous break down, i just am wonderigng if it maybe was a blood bubble behind it or what but now muscle undr my chin area and tonge are totaly afected , my tonge will even turn over , my uvuala is sideways , i thinnk it is odd for this is not how i was before. thanks for listening ( or reading i mean lol ); ▶ Reply to This

Permalink Reply by FelicityNexus on July 27, 2009 at 12:37pm: Does the brain stem control alot of the things to the basil ganglia and movement , along with the trachea?; ▶ Reply to This

Permalink Reply by Rosemary on July 27, 2009 at 1:39pm: I believe the brain stem (medulla oblongata, specifically) controls respiration and heart function. I think the basal ganglia is lower mid brain but above the brain stem. My memory of anatomy may not be accurate, however.
I believe my issues taking a deep breath had to do with the tightness in thoracic muscles (rhomboids).; ▶ Reply to This