Vic,
I should already be in bed now, but since I am having troubles in that area again, I am still up. I came to check email and look at a few things before turning this thing off and hitting the sack with a book I am reading, and I saw that last post of yours on the "Upset" thread. I thought that I needed to write something, because I understand where you are coming from and have some things to say that might be helpful. At least I hope they are. I couldn't just go to bed without saying what I wanted/needed to say to you, because I could hear that you are upset...or maybe a better word is disheartened? (Sorry...my vocabulary seems to diminish as the night/morning goes on, and my brain goes from just being "rusty" to being down right LEAKY! ROFL)

First, I think that the reason that you might not have had some of the feedback that you expected from your first posting in that thread, is because it kinda didn't fit with what the OP was talking about. I think that you would get more response if you maybe moved it to a thread unto it's self? At least that is what my opinion on the matter is (and we all know about opinions....lol).

Second, you DID get a couple of "attaboys" there for that post. Did you notice the "Thanks for this!" box right under your posting, where Allen and Joan M both gave you "Thanks"? That is one of the newer features here on the forum. It allows folks to give a "Thanks" for a particular post without having to do a lot of typing. So, there is proof that your posting was and is appreciated.

Third, I am kinda confused as to why you think that your post(s) would burn bridges" or **** off folks? I read them both, and I don't see anything as to why that would be a worry? In fact, I am very much looking forward to this new website that you say you and Allen are getting together to get up and running. I admit that I have fallen out of the swing of things around here, but I really don't see why anyone would be upset with anything that you had to say in that post. If someone doesn't agree with it, then that is different than being upset, you know? Personally, I didn't realize that cyanosis isn't listed by docs as an RSD symptom/problem. That really does blow my mind, because I always thought that looking for the odd colors and mottling was one of the ways that docs got their clinical dx for RSD, and always assumed that it would be indicated in medical records.

I guess that I have to amend that last "point" I had there, because going back and rereading that post, I guess that I can see where maybe Mike would get a little upset, since you do kinda call him out....and maybe where folks that are all about Dr S might not be too happy. But, I do think that most everyone knows that all docs aren't right for everyone, and that there will be people who are going to have issues with ANY doc, no matter how much of an "expert" them may or may not be, if the doc in question didn't/couldn't/wouldn't help them personally. I know that you have your ...erm...."issues" with and about Dr S, and that is fine with me. I have never seen the man, and don't really think that I ever will (since I am not interested in the ketamine treatments, and especially not the German Coma ones that he seems to be doing a lot of now). I just take what I think works from whoever/whatever/where ever I find it, and see what I can use or make of it for myself. For example, I DO NOT agree with lots of things that the infamous Dr Hooshman says about RSD, or how he was treating his patients (or a lot of them) and NEVER would I go and see the man myself, BUT....I do agree with some of the things that he says completely. If that makes any sense? I guess that I feel the same way about most docs, Dr S included, so the things that you have to say about him really don't matter that much to me. If you are worried that folks get turned off by your posts, and are worried that maybe the comments about Dr S are going to upset folks....maybe you could kinda leave that part out, or tone it down a bit? Like I said, that is the only thing that I can see that might upset folks at all about that post (and it didn't upset me...so please don't think that. Ok?)

I really do think that if you put that post in a different thread (it's own?), that you might have more response to it. Also, there is the thing around here about long postings. Personally, I don't mind reading them in the least. Probably because I write them myself, LOL. But there are folks that can't read them, or get turned off by seeing them (This I know, because I have had the same things happen with my posts as you are having with this one. I have seen someone ask questions that they wanted answers or advice for, and have taken the time to sit and answer or try to help as much as I could, only to have my post(s) be ignored. Yet, someone else can follow further down in the same thread and answer some of the same things in the same way that I did, only shorter, and get all kinds of thanks. It DOES get kinda aggravating and disheartening, so I do understand how you feel about not having much feedback on what you took so much time to write for all of us to read and use. Just wanted to let you know that). However, I don't see how you can make your posts shorter without losing MASSIVE amounts of very pertinent info. So, I AM NOT telling you to shorten things up at all! I am simply trying to explain another reason why you might not get the response that you ought to get (at least in my opinion!). I figure that it is everyone's loss when they don't read the longer posts, because they miss out on LOTS of info. However, I do understand that there are those that can't read them for various reasons (vison problems, can't stay seated long enough, and don't remember what they read in between rests well enough...those kinds of things). I don't know what there is to be done about that part of it, as I have never been able to figure it out myself. ROFL, and we all know how long my posts can get (like this one is probably going to turn out to be...lol)!

I DO want you to know that I for one really appreciate all of the time and effort that you have taken now and all through the years to try to help figure out what RSD is all about, and what we can DO about it. Instead of sitting around saying "I wish that someone would do something to help find a cure", you are actually getting out there to TRY to do just that. For that, we are ALL indebted to you. I lament the loss of all of the work that you had put up on BT, since as you have already said, it looks like it is gone forever (I have kept a check on the "progress" of having that database back up for reference...and it seems as though it is NOT a priority whatsoever, although NO ONE will come right out and say that. Probably because they know that they would loose a lot of their members if they did fess about it. But, as my Momma says, "Actions speak louder than words", and the actions are that the database is lost, or at least that it will not be put back up on the web because it is NOT a priority. Shoot, BT it's self is NOT a priority anymore, really. Kinda sad when you think about it....and makes you sick when you think of ALL of the data that is lost for so many forums....but it does make me appreciate this place even more). I am very glad that you are still forging ahead with your work, and I am very happy that not only will you be posting it HERE, but also trying to keep it ever safer by putting it on a separate website too.

Basically, I just want you to know what I think the reason is that you didn't get a lot of response (have to remember the "Thanks" that you did get so far, though), and to let you know that I soooo appreciate you and what you are doing for all of us. I am so glad that you are still willing to do this research and then to try to write what you find in a way that all of us can understand (because, while I am not a complete idiot, and do have a pretty good vocabulary, I have to admit that all of that medical jargon that is in those articles and what not just kinda makes me go "huh?" and are hard for me to keep my brain focused on while trying to read. Especially the ones with all of the formulae and symbols and what not that look like some kind of other language to me...and probably are for all I know! LOL). So please keep up with good work, and know that you have LOTS of folks that have and do read what you write. You have to ALWAYS keep in mind the people that are true lurkers and never post, but DO come every day to read. That is one reason that I am actually glad that we are can see how many Views a thread has, and not just the number of replies. It lets you know that folks are reading....even if they aren't posting. LOTS of those "views" are the lurkers....so don't forget about them. They are quiet.....but they are here for the same reasons as the rest of us, and also want to find as much info as they can (speaking as one that has been known to go into "lurkerdom" for extended periods of time).

Alright. I am going to end this now, because I will probably start to repeat myself very shortly (even worse then I already have. LOL). I do want to say, besides all of what I already have said, that it makes my heart happy to see you posting. I worry about you when you get too quiet for too long. Shoot, I worry about you anyway, my friend, because I care about you so very much. I hope that you still know that. Your being here is part of what makes this place "home" for me. I wanted you to know that, because so very many times recently I have seen you write about how much you care about and love all of us here, how we are right up there with your family in you heart. I want you to know that the feeling is mutual, at least on my part. You are loved, and you are cared about...and we NEED you here. I Need you here. I wanted you to know.

Lots of Love and ((hugs)) for you, my dear old friend. Promise me you will keep on posting, just like you always have? Know for sure that I am one that is reading...Ok?

Love Always,
Jose

I try to read all of the posts. One problem I had was that work took my laptop. I couldnt sit in our computer room for very long at all with my leg the way it is. The other problem I have is paying attention. I can only pay attenetion for a short time for some reason. But I have got my laptop back now so maybe I can read alot more! Also thank you all that post the long post with lots of info! I am trying to learn as much as I can about what I have!!!!

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
__________________
rsd_hbot@hotmail.com

Vicc, you are certainly not alone in not getting post answered.

I have noticed in the last few months when people would start things that everyone scatters like a bomb was thrown in the room with all of them.

I have seen new people come on here and not get any help nor support at all. I have actually talked to several on the phone and still email with them.

As far as the oldies, they seem to have scattered also.

We need to support any and all that come on here, not just pick and choose who we do answer. If we don't know what they are talking about then yes we might skip it or come on to them and just say hi and give them some emotional support.

It has bothered me a lot about this of late and have approched it with one of the Moderators. I realize there is nothing she can do about it but I just wanted to say something about what I am seeing.

We don't all agree on everything, and that's ok. We need to be ok with what we believe in and the fact that not everyone agrees with everyone.

Jose's right. People can come on here and say the exact same thing and someone will come on and aknowledge the second or third one that said it but not the first one to say it in the same post. I don't get that part myself.

People do try to read what you have to say and we may not agree with all of it, like Jose, I can't even understand a lot of medical words and it's hard to look everyone of them up so I just try to understand what I can of the medical post at times.

I would hope I don't get any flack from how I feel about this whole issue but I just think people need to support everyone that comes on here for help and pretty quick so they don't just disappear into darkness by themselves.

Ada

I enjoy reading Vicc's posts too-
I get a bit lost on the tech jargon sometimes. But I can get the gist of it.
And my vision is goofy sometimes too- some fonts and /or colors don't have enough contrast and it makes it hard to keep my concentration.

Does anyone else have that trouble?
Are the dark fonts easier to read or keep your concentration?

I thought I posted this on one of the other threads - unless i forgot to hit the submit button.

The moderators of a forum can move individual posts to make a new thread - and it's no trouble for us to do it. All you need to do is send a PM about it to one of us.

Heya

Ada - I think one of the reasons that people sometimes get missed is that some of us that struggle with concentration/ vision rubbish automatically look for names on threads that we know - shouldn't do it I know, but I suppose it's trying to keep up with whats happening - I find that I can very quickly lose track of what has happened if I'm not careful to at least try and skim some posts.....Also, I find there are some posts that I want to comment on - but that I have nothing to say... some of your deeply personal posts about you and Bill for instance - I read them and want to offer support - but it's hard to know how to do that when I have never been in the situation you are in - and I don't want to trivialise it by comparing it to anything that's happened in my life - meaning that I can't empathise with you - and sometimes I fear that sympathy is not always useful.

I wish we could have a button that was "I am thinking of you" or something - just to say the person was in our thoughts even if we aren't up to replying or maybe haven't got anything useful to offer.

As Artist said a while ago the whole spectra of this forum seems to be changing and perhaps as members we have to try and keep up with the changes...

Thanks for your post - I didn't really think about how much I reply to people I do know etc until it.

Love

Froggsy xxxxxxxxxxxxxxx

I Also Enjoy Vic's Posts, And Although I Sometimes Get Overwhelmed With The Amount Of Information He Gives In One Post, I Am So Intrigued By The Theory He Puts Forth. One Of His Posts Was The First Thing I Read On This Sight And I Was Happy To Read Of All His Researching. I Do Not Always Comment But Do Put A 'thanks' Because I Am Thankful For His As Well As Others Input. Rsd Is Full Of 'could Be's' ... And I Am Always Open To What Doctors Do Not Say. After All I Was A Nurse And I Know Doctors Do Not Know Everything ....that Is For Sure. Joan

I am so glad to belong to this group, and truely feel like it is a family. I mean how many times do you have disagreements in a real family? In mine it is ongoing, only because we are all different, with different opinions.

I know I come here and post things my family never hears or reads, and will never know unless they find them here. They absolutely would not understand the way my RSD family understands. Sometimes I try to tell them only to see the glazed look come over their faces

It is good to see Vic so full of life, and I too worry when there is long silence spells. I also worry about others as well, like Condor, Gigglebabe, and really all the people I have grown to love over the years that you do not see. That list is pretty long now

I am also like Frogga in that if I really dont have anything to add that would help, or even sound half way intelligent, or not have the words, I will not post. Even though I do try to catch the new people, I can only sit here so long. That is why I lean on all of you, or use the great (Thanks) hot button

We all really do have to stick together, for there isnt very many that understand what we endure, or even really want to.

Big hugs!!

vic.... don't try that 'lowly social worker' crap with me!....u know you've done good work researching rsd and as one who held off migration for a LONG time with antioxidants, i'm in a position to speak!

also....i posted this long ago on braintalk, when a member there questioned vic's ability and/or his "right" to do medical research....if u read it before, then skip it...if u haven't, then please note that while it may be hard for someone outside the medical profession to get their work taken seriously, that doesn't mean they're incorrect....an addition.... this was written before 2 australian doctors, who had been the laughing stock of the medical world 20 years earlier, were awarded the nobel prize in medicine for their work in CURING gastric ulcers.

Who should do medical research?

Should a Dutch merchant, who made a hobby of lenses, be given credit for amazing advances in medical science?

Thousands of scientists who have used the microscope invented by Leewenhock vote "yes".

Should an Australian women with no formal or certified training be allowed to treat children stricken with a crippling, sometimes fatal disease, in a manner opposed to the advice of neurologists and orthopedists?

Thousands of people who survived polio with no ill after effects thanks to Sister Kenny's heat and movement treatment, rather than the splint and immobilization favored at that time by doctors, vote "yes".

Should a young French chemist, whose career goals included the improvement of local wine and increasing the yield of silkworms, be allowed to work on a vaccine for a deadly disease carried by animals? or work on the public health problem of making food supplies safe?

Millions of children who grew up safe from tuberculosis carried in cow's milk, and hundreds of people whose lives were saved by Pasteur's rabies vaccine vote "yes".

Within the medical community, should researchers be allowed to investigate outside their own specialties?

Should a scientist, whose recognition is based on his work about cuckoo birds, be allowed to research and develop a vaccine for a killer, and often epidemic, viral disease?

Generations of people who have lived safe from smallpox, thanks to the work of Jenner, vote "yes".

Should a humble country doctor try to make a priceless contribution to public health and sanitation by discovering the tuberculosis bacteria? and contribute to the work of other giants in medical history, like Lister, by proving that certain germs cause certain diseases?

Millions whose lives have been saved by Koch's work on identifying bacteria, vote "yes".

Should an orthopedist be encouraged to do research in the field of endocrinology assisted only by a lab technician?

Every diabetic who has been able to lead a relatively normal life since approximately 1930, because of the work on insulin done by Dr Banting and Charles Best, votes "yes".

It seems obvious that some of the most innovative ideas come from those who are crossing disciplines, or by those looking at the facts with an entirely new perspective.

My own view is simple....anyone who is willing to struggle through medical papers and research reports looking for information that may be useful to those living with a terrible disease, is a first-class medical researcher.

Liz: An excellent post - and let us not forget that Albert Einstein worked in a patent office.

Not having a degree does not make one any less intelligent. Some members of Mensa are manual laborers. Not all are professors and doctors. People with an inquisitive mind are born that way. Not having the opportunity to get a degree hardly makes anyone less smart.

I would guess that most of us here have had to work under an "educated" supervisor who seemed to have the common sense and intelligence of a dehydrated pea. How many of us here have gone to a doctor who seemed clueless about our symptoms? Regards, Lil