Hi Bud,
Where are you? You are dearly missed here. Hugs, Roz

Dear Roz -

It's been a while, and I'm glad to be back in a real place, free from the odious Mods of past lives.

I have really missed being on the forum for the last few months, more than I can express. Amd the fact the Braintalk1 now up, but having apparently lost all of it's data, i.e., the threads, is just too sad for words.

Old friends may recall that I started getting interested in the immunological aspects of RSD after reading an article by Drs. Schwartzman et al in which they found extremely elevated levels if IL-6 in the CSF of all of the CRPS patient they evaluated. Then in February of this year a piece was published in the Canadian Journal of Medicine showing that IL-6 was THE LEADING PREDICTOR of death from Cardiac Artery Disease. At that point, in began to understand how I could go from a "zero risk" for CAD, as interpreted following a cardiac CT scan in the summer of 2002, to an MI only 2 years later. (A "nontranmural infarction" that was diagnosed a year later, at which point I got a stent put into the artery at issue. Fortunately, there was minimal damage: I lost about 10% if the muscle around my left ventrical, but various echo-cardiograms have since shown normal heart functioning, so I'm basically lucky.)

I've recently gotten my foot in the door with an appt. with an allergist/immunologist who is interested in novel cases via an introduction from my allergist in LA: I have gone from a history of wild childhood allergies to diagnoses of pulmonary sarcoidosis, MGUS, RSD and an MI all within the last few years. However, to see anyone else required a letter from my neurologist on LA. In the meantime, I was seen back home in Rochester MN at the Mayo Clinic where the kindly chair of the rheumatology department, who knows my folks and agreed to see me and then specifically referred my to a friend of his at Hopkins in rheumatology who is working in trials of a new IL-6 drug. Unfortunately, he couldn’t can't see me in a clinical context, because I don't have RA, and the drug has been strictly limited by the manufacturer - Roche - to patients with RA. So I figure that even if someone starts next week with a phase II trial on RSD patients, it's still another 4 or 5 years away from getting to us, unless we are willing to pay retail for off-label prescription.

In the meantime, my request to se a neurologist at Hopkins was passed from hand to hand until it was basically assigned to a young woman with the title of "Instructor in Neurology." She's board certified and has three published articles so far, none dealing with pain related issues as such, but she is interested in "rare neuro-immunological disorders."

My appointment with her is on Monday the 16th. I am pushing to get full cytokine panels of both blood serum and CSF, but understand that may be way off their list of treatment protocols for RSD and that as an untenured instructor, she may not have a lot of pull. Yet, I basically see this one hour appointment as my one shot for getting in line for a full work up at Hopkins. So that's about it in terms of waht's going on with me.

I'll let you know what comes of all of this.

Mike