Hi Jose,

I completely agree 100% with everything you just said (is that a first - no, we usually do agree!). Yup, every last darn thing. It was a very thoughtful post, thank you.

So there you are, Vic, that's my input too.

First, for anyone wondering what the heck this is about, I've quoted Vic's post below. The url is:
http://neurotalk.psychcentral.com/sh...0615#post90615

OK, done that.

So Vic...well, as I have said before, I wish you'd post on a separate thread (for the more serious posts, I mean) because I, for one, hate having my own threads railroaded and try (I know, often without success!) not to do it to others. So unless someone's writing in saying "So, what about cyanosis, then?", for example, I often don't feel right about diverting attention from the specific problem or query of the poster, to whatever I might want to ask you or comment on unless it's specifically related to the original subject of the thread, which it almost always isn't.

I've told you this before, but...well, you're an ornery old cuss and seems there ain't no changing you . Anyway, that's why I find it hard to post back to you in situations like your first post in the Upset thread. Doesn't apply to all your posts, but it often happens.

Anyway, we do need you to keep posting, whatever you do don't stop... love ya lots!
all the best

Vic's post:
The first words in my reply on this thread were "I'm probably burning a bridge"; well, this time I may almost certainly be burning that bridge, and that bridge connects me to the people I care about more than anyone except my family.

I wrote things in my last post that I think should have caused most people to ask 'Are the experts we rely upon for accurate information about this disease actually lying to us?' But no one even hinted that they saw anything wrong in experts pretending that cyanosis doesn't even exist in RSD.

I asked you to imagine how things would be different if doctors who never heard of RSD were able to look it up and see cyanosis listed among the signs and symptoms of this disease. Do you really believe that wouldn't make any difference?

Instead, I watched this thread drop off of page one without a single comment. I'm forced to ask myself whether everyone here simply believes I'm full of ****, or whether taking this disease out of your life just isn't worth the effort of learning something about it.

I've felt this way before: At BrainTalk I wrote at least three lengthy posts about symptom migration. I talked about the science that shows that it is at least possible that oxygen free radicals (OFRs) play a role in this. I reported that taking the antioxidant grape seed extract (GSE) has almost certainly delayed any symptom migration in my life for ten years now.

I said even more: I reported that when I stopped taking GSE I developed all of the signs of inflammation in both arms and both legs within a few days. I said I couldn't prove the inflammation would have progressed to chronic RSD except by letting it happen, and I'm not going to do that, but that it is more than coincidence that the inflammation developed shortly after stopping GSE.

In the years since I wrote my first post on symptom migration I have read post after post written by people reporting that it was happening to them, that another limb had been taken by RSD. I have cried over that, then I would write another post about symptom migration, and then read more sad posts.

I don't compare myself to Dr Ignot Semmelweis, who tried to get surgeons to wash their hands; for one thing, he was reviled by the physicians of his day, while I am merely ignored, but I have some idea how he felt; knowing he had an answer that could save lives but knowing that no one would listen to him.

I'm not going to end up like Semelweis either, dying a broken man in an insane asyoum. At worst, I will die knowing I did all I could. At best, I will leave this planet knowing that my work made a difference in peoples lives. That I may be a bed-ridden cripple, but that didn't stop me from trying.

It's possible, but unlikely, that my words here will will leave some people feeling I've insulted them, and they might write replies telling me that the Forum doesn't need people like me. Enough posts of that sort, combined with no "attaboys", could drive me away. I don't even want to think of that happening and I'm sure it won't.

Meanwhile I have written thousands of words about the cause of RSD and feel that no one really pays any attention to them: like I'm pissing into the wind. You can't know how frustrating it is to know that you're right, but you can't find the right words to persuade others.

So, I'm not going to post a formal poll, but I would like to hear from others what you need to read in order to decide to take the time to find out if I'm right. It would be nice just to read that someone is paying attention, even if that someone isn't entirely convinced that I'm right.

If, as I suspect, the fact that I'm a lowly social worker arguing against experts simply outweighs anything I might write, I'd like to know that too. It probably wouldn't stop me from writing, but at least I'd know what I'm fighting.

I could understand that view, even though I've written so many words about the science supporting what I say, and made countless offers to email copies of research abstracts so you can see for yourselves that I'm not making it up. Maybe I'd just post the articles and definitions for the words I don't think most people would understand, so you could see for yourselves that I'm not peeing on your leg and telling you its raining.

I'm sure that some people here wish I would just sit down and shut up, but I probably won't do that. I would like some hints about how to make my message meaningful to you, however, because you may not believe it now but in ten years or so researchers will have proved enough to make it impossible to keep telling people this disease is the result of nerve damage.

Or maybe I'm just writing this post because I'm getting older, weaker and finding writing more and more difficult. That I'm asking for a couple of attaboys to just encourage me to keep trying. Kinda like a wife telling her husband that all she really wants is to know the he appreciates having clean socks when he needs them.

So call this whole thing a "Vic needs an attaboy" and then decide whether you really care whether I keep trying...Vic
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