Thanks flippnout hugs right back at ya!

Sue

I also didnt like the part where they said it was all in her head. it made me remember how long i went diagnosed and how all these people were telling me it was all in my head and how frustrated that made me. but im glad to hear she is doing better now.

Hi, IHH.

Instead of softening my coming words by telling you why I admire your determination and envy your youth and enthusiasm, I'll just give you a patronizing pat on the head, say something about you still being young and still learning, THEN jump right into the shock; horror; amazement and downright awe I felt while listening to the voice-overs and watching Dr John Goddard make an absolute *** of himself.

The voice-over tells us that the brain responds to sensory stimuli by telling the SNS to tell injured tissue to become inflammed: Balderdash!! For 30 years, medical schools have been teaching that the immune system responds to trauma and causes inflammation. (How old are their textbooks?).

After reading (ok, often skimming) more than 5000 abstracts of various journal articles about RSD, I thought I had read every possible "theory"; hypothesis; speculation or fantasy about how the SNS is linked to this disease, but I never saw anything like this one.

I"m guessing it emerged, then submerged, in the late 1940's; shortly after researchers proved that SNS vasoconstriction is not a factor in RSD and when people were desperately looking for another role for the SNS. This one never made it to the big time; probably because it is so TOTALLY crap. Hey Frogga: Are they really recycling old textbooks through new classrooms over there???

Frogga, you know Zoe, so I'm gonna go out on a real long limb here and guess she is about your age (no older than 23?), and that she was at least 15 when she appeared in this travesty. That would make the thing about 8 years old.

I think that as long as you keep in mind that DHC airs 8 year old programs as if they are today's news, its probably safe to watch it. Just don't let their "professional airs" fool you into thinking they are giving you accurate and up-to-date information.

Anyway, as the voice-over continues to make me wonder how dumb so-called "experts" can really be, Dr John Goddard appears and shows me.

Even granting that he was probably speaking more than 8 years ago (and maybe earlier), doc G is incredibly arrogant in his ignorance of the literature of the time, even as the words fell out of his mouth and dropped to the floor:

"...[T]here is a huge psychological component, no doubt about it"

OMG!!! When I heard those words I had a sudden insight: one of us was crazy, and THIS time it wasn't me. It was like listening to a certain someone tell us about Iraq. Gimli whispers to me when words are falling on their heads.

Doc G did manage to make one incontrovertable statement: [she left]...a damaged child, untrusting of professionals. (No ****?? What other possible outcome after dealing with him?).

And this is certainly an instance of Mother Knows Best. Zoe's mother said: [she went]...into an intensive [physical] therapy program which unfortunately made her come out a lot, lot worse.

Frogga; I am so happy to hear about Zoe today, as you know I would be, but I'm also pleasantly surprised; some people do manage successful outcomes from today's HBO "therapy", but it fails far too often and frequently makes the RSD much worse.

That last should never happen, but here in the U.S. at least, HBO chamber operators are allowed to make misleading claims about "curing" RSD while having no clue as to how it works or why it fails.

Along with their spurious claims to cure other disorders, the thing is out of control and I'm afraid that the FDA will soon come up with justification for closing all of them and restricting HBO to accredited hospitals (which are not allowed to use it to treat RSD).

If anyone would like to read why I'm convinced that HBO is the appropriate therapy for RSD; why I think HBO chamber operators can hurt us today and may really hurt us in the future, and; my conclusions about appropriate HBO dosages, can find them in Buckwheat's thread: Vascular Issues.

(Yeah, the "my conclusions" is a bit heavy-handed, but it's my way of telling me that I'm really NOT taking myself too seriously).

"Type A Personality": nonsense. We're people from every profession; every walk of life; every economic or social group, we're people just like everyone else. We may feel we're different because of the burden we carry, but we see others with burdens we wouldn't want and we don't think that God; their brains; their minds (conscious or unconscious); or their foolishness got them into that predicament, so why would we think we're different? We're just people with RSD.

.doc G's conclusions (all of them), are contradicted by the overwhelming majority of the research; of physical and psychiatric physicians; of Christian theology and liberal western philosophy. Mike may find something in an eastern philosophy; I never really looked into them, thinking too hard gives me a headache.

Finally, for those who know me and may be wondering why I'm not really lecturing....I've decided that I'm tired of writing like a scientist wannabe, so I'm trying to learn to write like I think; or at least mix in some of me with the boring stuff. I would try to be the REAL me, but I don't know who the Hell I am.

Sooooooooooooooooo...this is the new me, or a "more real" me, or something like that. No need to comment, right now. I'm busy writing articles for the website Allen is going to build, and after I finish four of them I plan to post them here and beg for comments, suggestions, criticisms and arguments...the kind of stuff you want to hear from friends...Vic

Nessa: I do envy your youth and enthusiasm; it wasn't that long ago that I could finish four, 1000 to 1500 word posts in that many weeks. What's that new ADHD med called?

Vicc, I have to take offense at your put downs of John Goddard
He is also my daughters Consultant and I have found him totally sympathetic to our situation. Indeed he is the only doctor we have seen who has taken her pain and her situation seriously
No-one knows what causes a person to have RSD - there are a number of differing opinions none of which is proven to be any more valid that the next at the moment
Availability of treatments in the UK varies very much to those in the US and there are no guarantees that any method of treatment will work in every case
I am not sure how long ago this video was made but John Goddard seems to be like every Consultant faced with RSD - realising that a "one approach fits all" treatment regime does not work, he has to tailor his approach to each child in a different manner
We are all on a steep learning curve on this, John included
I have to agree that there is a psychological component in this in that as soon as Alison was told what was wrong and that there was no definte possibility of an improvement in her condition, especially after a failed guanethidine block, the stress and anxiety she felt played a large part in a downward spiral
I have nothing but thanks and admiration for John Goddard and his team and looking at some of the DVDs they have shown us I cannot help but believe in their ability to help my daughter back towards leading a normal life in the not too distant future

Heya..

Vicc - Zoe was undiagnosed for 2 years and got worse. I think that they edited Johns talk VERY badly - I know of him and he is a good bloke who does understand. I have to admit in Zoe's case when someone told her they were going to touch her or whatever she'd scream before they did it, and that's just how it always was. So, the fear of pain... is going to make it worse.

HOWEVER I agree that HBOT did help. That John explained RSD totally wrongly and that he came across arrogantly.

Ali12 - you will soon learn that there are thousands of treatments and doctors available in the US that we have no hope of getting and we have no hope of getting the assistance that these guys get. Depending on the amount of research you have done you will see that the description he gives of RSD is totally wrong in the video - it is now an outdated video and an out dated explanation. Stress does play a part. I have every belief and hope that John will help Ali.

Love

Frogga xxxxx