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Vicc · 10-23-2007, 04:31 AM

Hi Nikki,

I've pretty much stopped posting here but I still stop by and read what's going on, and I'm not too surprised that you haven't gotten a lot of supportive replies. We're all happy to see that you have a doc who has proven he cares, but for myself I'm concerned about seeing your hopes for recovery dashed.

I've been participating in RSD chats and forums for more than ten years and don't even want to remember how many hopeful posts I've read from people in situations identical to yours; there are really great docs out there, and you've found one, and that's great news; but no matter what specialist you see, no matter how many, RSD is still considered incurable.

I haven't gone back and read your posts, so I don't know how long you've had this disease. I don't know how many ups and downs you have been through with docs, but they can be as harmful as RSD when they're dismissive. You are so fortunate to find one who has real empathy, too many have been jaded by RSD; they believe they really are "fixers" and when they can't fix us, they begin to blame us.

Most don't think we're sabotaging our recovery, but they can't let themselves think that they aren't the healers everyone thinks they are, so they become brusque and begin to act as if there is something wrong with us besides RSD. Many of us have run into them.

Many here have seen rheumatologists in the hope they might have answers others don't, and we've been disappointed. They don't have the answer. No one does. But that doesn't mean there isn't an answer, because there is. No one has found it yet, but its there.

As a guy who had to cheat to pass my biology final (back in 1972), I'm surprised at how interested I am in the subject today: I have Dish satellite TV, which has three channels that emphasize a lot of medical and scientific research, and I "Tivo" just about all of it; and have watched knowledge grow right before my eyes.

Discoveries in one field have major effects on unexpected areas, and these discoveries are coming at an ever-increasing rate. One of these discoveries will help us beyond imagination, and I don't think its very far-off. I watch scientists talk about how something someone else learned triggered an insight for them, and they went on to some amazing discovery in an unrelated field. It will happen.

If you've read many of my posts, you know that I believe I understand the cause and nature of RSD, but whether I do or not makes no difference; I'm a bed-confined social worker and no one is going to pay attention. It really doesn't matter whether I'm right or not; what matters is that more is being learned about RSD all the time, and someday soon someone will find the right path.

Ten years ago, the literature on this disease had many abstracts denying that inflammation had anything to do with RSD; today, there are links on page 1 or 2 here at NT that discuss inflammation in RSD. I view that as extremely hopeful, but whether it is or not, the fact that new ideas are finally being presented is proof that people are actively looking in different areas. Someone will find the answer.

Meanwhile, I hope you can find fresh hope in a doc who cares, and who knows; maybe he will be the one to connect the dots. Someone is going to. Until someone does, however, the best ally we can find is a doc who wants to help us in any way he/she can. My greatest fear today is that something will happen to my doc; that I will lose him. He doesn't have any answers, but he has a good portion of empathy and I really need that...Vic