Movement Test For Dystonia
I went to the Mayo Clinic and was Dx with Dystonia by a movement Neauro. He is sending me to Dallas for a special movement test before he will put me on medication. Does anyone know of what he might be talking about? The shaking is driving me batty and i have it a lot at night. Please let me know if any one has heard of the test.
Replies to This Discussion
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Permalink Reply by beka on -
Hi Frieda -
I think it best that you call your neurologist and DIRECTLY ask him about the TEST. Name, purpose, what it involves, what it will say, why ??? I have never heard of a special movement disorder test for dystonia that you seem to be referring to. Why is he sending you to Dallas of all places ?? Wouldn't going to Chicago be easier ???
Have you looked at the post about " What Tests do you need for Dystonia " online here. Many of them can be done in the Mayo Clinic .
What are your symptoms ??? May be that will give us a clue to what test he is referring to ???
Anyone else ??
beka
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Permalink Reply by Monica Coogan on -
well actually there is scale doctors use for dystonia. it's called the burke-fahn-marsden rating scale, but i'm sure it is not advanced enough to be inclusive of all dystonias. doctors probably wouldn't be inclined to use it unless they had a really good reason.
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Permalink Reply by Joe on -
Hi Monica,
The Burke-Fan-Marsden Rating Scale is not a test so much as a rating scale to help the clinician in his/her diagnosis...it's basically a checklist of symptoms, location, duration, severity, etc. It was developed to help the clinician make a accurate diagnosis and also to standardize information regarding dystonia and its expression within the medical community. There's also another rating scale called the Toronto Western Spasmodic Torticollis Rating Scale (TWSTRS). I'm assuming, because of the name, that it is mostly used to help diagnose CD.
Unfortunately, there exists no "test" in the sense that one would define a test...say, a blood test for example. I wish there existed such a thing. Perhaps then we'd all have a better chance at an accurate diagnosis much earlier in the game...anything to take the final decision out of the clinician's hands.
All the best,
Joe
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Permalink Reply by ramona on -
There are clinical tests they do to check specific cranial nerves, but these are the very simple tests, such as touching your finger to your nose, fingers to thumb, flipping hands over on lap, etc. When I was initially diagnose with dystonia, the MDS was specific on why he thought it was dystonia as compared to other movement disorders. He even showed me what other disorders looked like (by doing the movements himself, no less!) so I could see the difference. I am also not aware of a test that determines the difference between movement disorders, though, as there are also so many similarities between them...
Blessings
Ramona
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Permalink Reply by Rosemary on -
I thought they used the EMG to test for Dystonia (electromyography- charts muscle activity)
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Permalink Reply by beka on
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Not necessarily- Diagnosis of DYSTONIA depends on the clinician's experience, knowledge, patient symptoms, drug history , scans etc... Multiple items. ONE SINGLE TEST DOES NOT tell any clinician for certain if dystonia is dystonia...
Diagnosis is based on the grounds of suspicion or a positive gene test like the Dyt1 gene.. but you have to put together the entire picture of the patient FIRST.
Unfortunately that is niot happening within neurology and dystonia...
SEE THE ARE U at Risk webpage on www.care4dystonia.org
beka
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Permalink Reply by Jenn on
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Multiple items is so very true. Three Neuros did the exact same tests.. (2 movement spec. 1 neuro w//dystonia exp.) And I got 3 different diagnosis.
Test all they want.. but the correct diagnosis mostly depends on experience, knowledge and how much they listen to you.
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Permalink Reply by Rosemary on
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Well, sometimes they get it right, it just takes a while. I had it for decades before they even got to any form of Dystonia- earlier diagnosis ranged from MS to discogenic pain. I was with a Physiatrist with 3 years when he finally decided it was Dystonia- he thought Cervical. I then went to MDN, who happened to have a colleague visiting. They ran me through several physical tests independantly, considered my history (head trauma) and looked at the EMG and both were absolute it was Segmental. A year later I finally decided to bring up my hips and legs (which I had thought was from a slight disc issue), an EMG was done and then they decided it was Generalized.
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Permalink Reply by beka on
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Hi Rosemary - How did the physiatrist come and reach the conclusion iof dystonia for you ? I have yet to meet a practicing physiatrist. Where are they hiding ?
beka
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Permalink Reply by Rosemary on
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Not sure where they are hiding- there are several in my area of southern California, although they are not as common and other pain management type. They actually know something about Dystonia. The one I go to most often using a phenol blend to treat my jaw and neck/dystonia. Before medical school, he was a chemical engineer. I also go to another one who does facet nerve blocks every 6 mo to help with all the post failed neck surgery pain (the former one does not do that procedure)
I had been with the Physiatrist for several years before he decided it was Dystonia. It was after I started to have all these issues with my shoulder/arm attributed to severe disc issues and I had the first neck surgery (before it failed)- and there was essentially no improvement in my symptoms. He came in, looked in me, and said come with me- I want to test something. He did an EMG, and- taking into account all the other history (head trauma, jaw issues)- decided it was OM & C Dystonia. Another doc suggested going to a MDN to get a second opinion. I went to Dr Hermanowicz at UCI, who happened to have Dr Brin from NY visiting- they independantly came up with Segmental, although it was later changed to Generalized. I think the only way I was managing for many years before the diagnosis was be retreating to a pool every day after work.
To some extent I think it was a process of elimination for the Physiatrist, plus the extra info from no improvement after surgery and the EMG..
Maybe if you googled Physiatrists you could come up with some in your area.
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