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In this section of the Forum, I will try to explore and hunt down the latest research there is on dystonia, what it means to you, how you can participate in clinical trials and more.
If anyone comes across an interesting research item, articles, news, please post it in this section. So that everyone has access to the links and
information in one section of this Forum.
Contribute !

beka

Tags: clinical, disorders, dystonia, movement, neurology, news, research, trials, updates

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New Botulinum Toxin Trial :

CERVICAL DYSTONIA STUDY INFORMATION SHEET

You may be interested in participating in a cervical dystonia study entitled, “Pre-injection, multi-channel EMG mapping to optimize Botulinum toxin Type A efficacy in Cervical Dystonia.” This study is being conducted by clinical researchers at the UCSF Department of Neurology. The overall goal of this study is to determine if patients with cervical dystonia who have not had benefit from Botulinum toxin injections may have better results with Botulinum toxin when a muscle mapping technique is used to help physicians determine exact injection points. The mapping technique is a simultaneous multi-channel EMG study of 12 muscles of the neck prior to injection. The purpose of this study is to evaluate whether pre-treatment mapping with simultaneous EMG to determine which muscles contribute to the pattern of dystonia will result in more benefit to you.

This study will include the following:
• A complete neurological history and examination to confirm diagnosis of cervical dystonia, current medications, and review previous Botulinum toxin injection history.
• Videotaped rating scales to determine the severity of dystonia as well as the effect the dystonia has on your quality of life.
• Two separate Botulinum toxin injection sessions, one of which will rely on conventional “single lead EMG” technique and one of which will follow a multi-channel study of the neck in which multiple symmetric muscles will be examined with EMG simultaneously to determine which muscles contribute to dystonia.

The study will last roughly six months and the cost of all office visits, EMG studies and Botulinum toxin will be covered by the study. If you are referred for consideration of this study, the first clinic visit will not be part of the study and will be billed to your insurance as a regular consultation.

If you are interested in participating in the study, please contact me at 415-221-4810, x2657 or my associate Dr. Jill Ostrem at the University of California, San Francisco, at 415-502-3576. Participating in research is voluntary.


Graham A. Glass, MD
Assistant Professor of Neurology
University of California, San Francisco, U.S.A.

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If you belong to Yahoo, MySpace, Facebook, please let those members know about this new clinical trial.

beka

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TMS Study at NIH in 2005:
This study used transcranial magnetic stimulation to examine how the brain controls muscle movement in focal and generalized types of dystonia. Dystonia was focal, involving just one region of the body, such as the hand, neck or face. Focal dystonia usually begins in adulthood. Generalized dystonia, on the other hand, generally begins in childhood or adolescence. Symptoms begin in one area and then become more widespread.

Healthy normal volunteers and patients with focal or generalized dystonia 8 years of age and older were eligible for this study. First-degree relatives of patients were also enrolled.

In transcranial magnetic stimulation, an insulated wire coil is placed on the subject's scalp and brief electrical currents are passed through the coil, creating magnetic pulses that pass into the brain. These pulses generate very small electrical currents in the cortex-the outer part of the brain-briefly disrupting the function of the brain cells in the stimulated area. The stimulation may cause muscle twitching or tingling in the scalp, face and limbs. During the stimulation, the subject will be asked to either keep the hand relaxed or to slightly tense certain muscles in the hand or arm. The test will last about 1.5 hours.

The cause of dystonia is unknown. It is hoped that a comparison of brain activity in normal volunteers, patients and their relatives not affected by dystonia will help scientists learn why some people develop dystonic movements.

Anyone know of the results of TMS ? I do believe that TMS is being done in Montreal, McGill University.

beka

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That's my hope that others will post as they come across the latest research clinical trials available to them.

beka

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Another Dystonia Trial -

For those immune to both Botox and MyoBloc , visit www.mycdstudy.com.
You may be a candidate. Investigate and Call.

beka

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Hi Sparky,

I'm very interested to find out where you located the results of TMS in treating dystonia...darned if I can find it.

I've had DBS and it was successful at alleviating 80 to 85% of my symptoms...it basically gave me a good chunk of my life back. I am, however, longing for the day when a new, less invasive (yet just as effective) treatment is discovered. When that becomes a reality, I'll be rushing to my nearest surgical center to have my brain's "training wheels" removed permanently.

Thanks,
Joe

PS I really want to thank you and people like you (Beka et al) who do a lot of the "heavy lifting" vis-a-vis the latest developments in dystonia research. It really is a great service to those of us who are "Google Impaired". Actually, I did find an interesting article on the use of AMPT in the treatment of tardive dystonia/dyskinesia. Here's the link...I'm going to speak to my neurologist about it in August. http://neuro.psychiatryonline.org/cgi/reprint/19/1/65.pdf

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Hi Sparky,

Fascinating stuff. The theory that it is more than a basal ganglia disorder strikes me as plausible as well.

As to whether or not I'd have DBS surgery again, the answer is an unqualified yes...in a heartbeat. Surgery improved my symptoms 80%. Unfortunately, I'm unable to return to work. That 80% figure only holds true in relatively stress-free environments. My previous career was anything but stress-free.

Yes, I was diagnosed with tardive dystonia.

All the best,
Joe

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Here's another clinical trial :
A experimental treatment for focal hand dystonia or writer’s cramp is currently being conducted at the University of Minnesota in the Department of Physical Medicine and Rehabilitation. This study involves non-invasive stimulation of the brain using repetitive transcranial magnetic stimulation, rTMS. Regions of the brain controlling movement have previously been shown to have abnormal activity that may cause the abnormal posturing and movements observed in writer’s cramp. We have recently found encouraging results using rTMS with patients demonstrating lasting modifications in brain activity and writing performance.
We are further investigating this technique to more fully understand the therapeutic potential of rTMS in people with focal hand dystonia. Volunteers between the ages of 18-65 that have experienced activity-specific movement control problems are being sought to participate.
If you are interested in receiving more information, please contact Teresa Kimberley, PhD, PT at 612-626-4096 or tjk@umn.edu

beka

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Hi Sparky,

It does appear as though TMS does show some great promise. I would love to participate in a study. Unfortunately, my DBS hardware (metal plate in head) seems to be an exclusion criterion in all of the TMS studies I've looked up. Wouldn't it be ironic if the "gold standard" treatment for focal (and perhaps generalized for that matter) turned out to be some form of TMS...and I'm not eligible because I'm a prisoner of this clunky technology that's so 20th century?

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Sparky -
I already have freaky wires in my head. With your proposed question to Joe - Would you do DBS again ?
Truthfully I'm not so sure. There are new limitations and adjustments placed on one with DBS, plus there are NO long term outcome studies of the benefits of DBS for dystonia. Medtronic refuses to sponsor any...

There has been increasing discussion of dystonia being a global cortex disorder. No longer exclusive to the basal ganglia theory.

beka

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Could you post links to some articles in this discussion, Beka? I would love to read about it (global cortex disorder), if they have been published.

Thanks!
Ramona

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Some new uses for Botulinum Toxins :

Link : http://www.neurologyreviews.com/jan00/nr_jan00_yesterdaystoxin.html

beka

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Toxin 2008 Conference held in Italy June 2008.

Check out the Abstracts of the conference at :

Link : http://www.toxins2008.org/toxins2008-program.asp

I am gettng a copy of the entire program !! And will post new research here in this Post.

beka

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