Originally Posted by fmichael

Dear Renee' –

Hi. I was seen twice by RSD specialists in the Mayo Clinic, Rochester. The first time (2002) was a disaster, I had used some contacts to get in early - 8 months into the affliction with a peripheral neurologist of some repute, who told my despite my pain and my obvious response to blocks that I didn't have RSD/CRPS because they could not see (at that time) the necessary "objective findings." Little did I know that she was putting the finishing touches on an article concerning the incidence of CRPS in a population of approx. 100,000 people which used fairly rigid selection criteria. So rigid in fact that it was debunked in a major study published a few years later.

The second time (2006) I was seen by one of their key CRPS/RSD treating physicians, while I was “going through the Clinic,” largely on other concerns. By this time it was obvious that I had it, but there was nothing they could do for me, such as an inpatient ketamine treatment, where they required that all of their pain patients live in the immediate area for purposes of follow up visits, etc.

So to the extent you can stress that getting to and from Jacksonville is but a hop, skip and a jump, it would work in your favor. That and be sure to have copies of all of your test reports to date (or as many as you can) with you when you go in.

Sorry that I don't have more specific information on what Jacksonville is currently doing in terms of treatment. What I can tell you is that you will first have your history taken by a clinical fellow, before you see the consultant. In that regard, you should feel free to ask your own questions, which you should write down in advance.

And one of those questions may be how the relatively recent determination that CRPS (like Parkinson's disease) is an affliction of a "'thalamocortical dysrhythmia" (TCD) is effecting the treatment options the Mayo Clinic is now considering?

For more on that last point, see, Abnormal thalamocortical activity in patients with Complex Regional Pain Syndrome (CRPS) type I, Walton KD, Dubois M, Llinás RR, Pain 2010 Jul; 150(1):41-51, Epub 2010 Mar 24 FULL ONLINE TEXT @ http://www.rsds.org/2/library/articl..._Pain_2010.pdf While the article from the NYU group headed by Rodolfo Llinás - he is one of the top neuroscientists on the planet - may be difficult to follow, the Commentary that was published with it in Pain is far more readable: Thalamocortical dysrhythmia and chronic pain, Jones EG, Pain 2010 Jul; 150(1):4-5, Epub 2010 Apr 14, FULL ONLINE TEXT @ http://www.rsds.org/2/library/articl..._Pain_2010.pdf (And thank you, RSDSA.)

Good luck!

Mike


ps True story: I had the pleasure of hearing Dr. Llinás lecture at UCLA on "The Objectification of Subjectivity," on October 19th, essentially on how with a MEG reading it was possible - by the specific pattern of the TCD - to diagnose not only a patient's dysrhymically based illness, but how the patient felt about, without any further information whatsoever!

In the reception afterward, I introduced myself as a retired attorney with CRPS and thanked him for his work on it earlier this year. He said he was glad that the work was appreciated, to which I replied that the best part was really the beautifully understated first paragraph of the accompanying commentary of Edward Jones, to which he started to chuckle. Then I added "It was essentially a message to the pain community that they would have figured it out ten years ago if they had read the frig-gen literature!" At which point he doubled over in convulsive laughter.

That (IMHO) is one of the problems in neurology and neuroscience today. There is too much compartmentalization, on account of which even the best pain specialists at the leading universities are not keeping up with the specialized literature in other communities, in this case, the electro-physiologists who perform EEGs, day in, day out.

pps I am informed that when applied specifically to the brain, electrophysiology is sometimes referred to as neurophysiology, where the more general term is at times understood as applying to the study of the neuro-stimulation of the heart.