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Vicc · 04-30-2007, 03:42 AM

Hi Katie,

and welcome to our family. You are new to this forum today, but you'll be kicking your shoes off and chatting with good friends tomorrow.

I wish we had never had to meet, since without RSD the chances of that would have been slim indeed, but I'm glad you found us. This would be the best place for RSD people to meet even if I weren't here; we will hold you up during the really bad times and you will feel our love. Within days you will be doing the same for others; "newbies" and old-timers alike.

I'm sorry this disease struck you at all, much less at such an early age, but you will meet people here even younger than you. I know of other sites that have "junior forums" for the kiddies, but we're all equal here; except Mike, who hasn't figured out yet that I'm the king around here.

I'm not surprised that you aren't satisfied with your experiences with Stanton-Hicks: You may have gone there because you heard he's one of the best, and unfortunately, that's true; a reflection of the fact that the "best" in RSD are almost universally incompetent.

You refer to S-H as a "rude old man", and frankly, I'm surprised: In his videos he comes across as the kindly, fatherly sort of doc that people talk about knowing back in the "good old days" Is there nothing we can trust anymore? The next thing you know, someone will tell us he wears make-up in those videos.

I wish I, or anyone, could recommend a good doctor for your RSD, but the truth is that you won't find anyone who can help you beat - or even stay even against - this awful disease. If S-H, or anyone else, knew of a way to truly help RSD patients, their secret could stay be hidden for long: soon every doc would be using it to help their patients.

Knowing this, I do try to tell people that waiting two to three years for the opportunity to be seen by the Great Guru of RSD: Dr Robert Schwartzmann in Philly, is nothing less than clinging to a false hope. He can't help you either. He doesn't have a clue as to how to "fix" RSD.

He does offer the latest fad; ketamine infusions, but you will need cash up front because insurance won't pay for it, and his claim that 50% of his patients experience significant relief seems astronomically high: so far as I know, only one member of your new family came away with significant relief, and more than 2 have gone.

I know how thrilling it must be to be greeted by news like this, but the truth is that we are all here because none of us has gotten better. All is not hopeless, however. I have been intensely and systematically researching this disease for ten years, and for the past six years I have been telling people why the experts are wrong and telling them what will help.

Few pay any attention to what I say, but most agree that while I'm a crochety old man, I'm fairly likeable, so they let me hang around. A half-dozen or so have read my posts and followed my advice: they don't even drop by anymore; I guess they're too busy living their improved lives.

I don't expect that you will pay much attention to an apparently delusional non-physician either, but over time you will probably read some of my posts and may find reason to rethink your original impression.

Meanwhile, welcome. You will find more of what you need right here than anyplace else I know of. Just being with people who understand your suffering because we share it, yet still manage to live, love and laugh, will sustain you.

Oh, yeah, about S-H. Get the Hell out of there!!! Shoot your way out if necessary. You don't have to shoot anyone, just put a couple of rounds in a light fixture and they'll all duck and you can escape. It's happened before, so they're used to it.

I hold an especially hard place in my heart for the Cleveland Clinic. A beautiful young mother, not much older than you, pinned all her hopes on her appointment there. She, too, was treated shabbily. She came home, posted a bit about her experience, then ended her life.

I will never forgive S-H for deliberately misleading her into believing he could help her when he knew he couldn't.

Meanwhile, next time wear loafers, they're easier to kick off that the lace-up kind...Vic