Dear leiea -

You make your points very well. As for your doc, all I can think of is printing out the articles appearing under the heading "CRPS and Dystonia/Movement Disorders" under the RSDSA's Research and Clinical Articles page, at http://www.rsds.org/2/library/articl....html#Dystonia and politely giving them to your doc, as something to which you had been referred through a patient support group n the U.S., unless of course you believe that it would not be possible to do that without offending him or her.

However, as you have seen, there are a lot of doctors who regard dystonia as "psychogenic," which is to say that it is "of the mind." For a nice back and forth in the form of letters to the editor of a medical journal, following the publication of an article of the same name, you may want to look at this: Progression of dystonia in complex regional pain syndrome http://www.rsds.org/2/library/articl...espondence.pdf, which is included in the section from the RSDSA Research and Clinical Articles page I mentioned above. Please note the distinction that is made between "sudden onset" dystonia and that which develops slowly over time.

Finally, for an article showing that this really is all in your head, except that it is an organic brain condition, there is an admittedly very difficult scientific paper, Abnormal thalamocortical activity in patients with Complex Regional Pain Syndrome (CRPS) Type I, Walton KD, Dubois M, Llinas RR, Pain 2010 Jul;150(1):41-51. Epub 2010 Mar 24, RSDSA ONLINE TEXT @ http://www.rsds.org/2/library/articl..._Pain_2010.pdf

Please note that Adobe Acrobat Reader is needed to open the articles, which you can download for free at http://www.adobe.com/products/acrobat/readstep2.html (Although I would personally un-check the box to download the free copy of McAfee® Security Scan Plus, where I found the program to be pretty useless in the absence of McAfee's not-so-free real product.)

Finally, while I don't have true dystonia, I have suffered with profound leg spasms since shortly after I got RSD/CRPS. The best medicine I have found for it is Baclofen, which I take orally at 50 mg./day, although I know of some people with dystonia who have gone on to use an implanted pump where far smaller quantities of the drug are delivered, through an implanted pump, directly to the spine. However, that technique is not yet considered perfected. I personally get the best results from Physical Therapy and a synthetic form of a naturally occurring form of one of the 9 THC molecules that are the active ingredient of cannabis (marijuana) in a drug called Dronabinol and sold in the U.S. under the brand name Marinol. (Please see the attached.) The only problem is that Dronabinol makes me too intoxicated to drive or even send emails without severe embarrassment the next morning.

I wish you only the best all with this.

Mike

Attached Files

Marinol aka Dronabinol [synthetic delta-9-THC] Prescribing Information.pdf (96.9 KB, 4270 views)

You're timing couldn't have been more perfect! A dear friend was told she has Dystonia and I wanted to help. Today you helped me help her and I'm appreciative to the heart. Bob.

hey

thanks for your answers! it really helps to read your posts and to see that the weird things my foot does aren´t that weird...and other experience the same

my dystonia - or now its more like a movement disorder like a tremor or so....has spread over my whole leg, and it rarely stops....but i´m currently started some medication which make me sleep - and it´s such a relieve to sleep more than 2 or 3 hours a day - however the pain and the movement is still there, and i really think of trying a lumbar sympathetic block - i only want the pain to stop - but i´m not sure if i should do that - any experiences?

xxx
leiea