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In hindsight, I feel this thread is vaulable to many and I'm opening it back up to continue...without mention of the prior conflict.
I appreciate everyone in this...so much. KD |
Thank you for working with me on this.
KD |
no definitive diagnostic test exists. Neurologists are experts at designing tests that diagnose neurological disorders, but they can’t find any way to diagnose any neurological dysfunction in RSD; perhaps because the neurological dysfunctions in this disease are the result, NOT the cause of RSD,
I have done alot of research on this subject and have come to the same conclusion Sandra |
Hi Sandra,
It's good to know that there are some people who are reading my posts and comparing what I say with information they find from their research. Thank you...Vic |
Hi everyone,
I know I run the risk of being thought as being like a broken record but if I thought that some of my questions had been answered by what I read, I would not continue to ask :( I respectfully put these questions to anyone who can give me an answer. * If RSD/CRPS is NOT neurologically based (as opposed to a specific nerve injury) then why is there world wide, well documented evidence that early intervention with Nerve Blocks and Mirror and Graded Motor Imagery when there is often no other symptom other than pain , is there is a high chance of remission or full recovery? * Isn't it true that an injury or malfunction of our Autonomic nerve supply will lead to one of the possible symptoms of RSD/CRPS--ie-cyanosis due to vasoconstriction, as it is the autonomic nerve supply which controls the dilation and constriction of our vessels and therefore account for any resultant atrophic changes. *If RSD/CRPS can be caused by something as simple as a paper cut where there has been no disruption to the perfusion of the skin, how can this be an IRI? *If the diagnosis of IRI is when there has been damage to the tissue after the blood is returned to it after a time of ischaemia and RSD/CRPS is an IRI, then why do so many people have RSD/CRPS without ever having a period of ischaemia in that limb. This would be particularly relevent in the spread of the disease which usually occurs with NO particular inciting event to the area of spread. I thank anyone who will consider these questions and without reposting the myriad of articles and abstracts that have been recently been posted with regard to the possible causes of RSD/CRPS, I would just like to recommend any article written by the well known leader in treatment of RSD/CRPS- Dr. Wilfred Janig. What he says makes sense to me but of course---that is just me. Cheers to all Tayla:hug: |
Tayla,
Re: Your most recent series of questions. #1. You cite instances in which there is often no other symptom other than pain: A diagnosis requires signs and symptoms other than pain. If someone is diagnosed with RSD based solely on pain, it does not appear to be valid. #2. Please read my first post on the thread Facts, fiction and RSD. It explains how sympathetic vasoconstriction became the only explanation for this disease for 70 years and why research eventually discredited this view. #3. Please read my post #17 on this thread. #4. IRI only begins after the immune response to trauma, and that response always involves ischemia; if RSD is IRI, there was, and is, ischemia. I guess I wasn't specific when I asked for questions or comments, but what I meant were questions about what I wrote on the thread, NOT what I have written elsewhere. I can't accomplish my goal of explaining IRI if I have to spend my time answering questions about what I have written in other posts...Vic |
Vicc, I just wanted to say "Thanks". I have been doing a bit of research since you started this thread. I am fascinated by your approach to this awful disease. There is a dr. named B. Kaada who has many articles about ischemia in the European Heart Journal. I think you might find some of this info helpful. Oddly enough, I came across the name of this Dr. through a printout given to me for my TENS unit. Kaada's name is on it, and basically he/she equates rsd/crps with ischemia. I hope this name helps you in some small way to prove your theory. I would dearly love for you to be correct, so we can all get the treatment we need and deserve. Like you, I have virtually no life off my couch or bed. As my legs are elevated above my heart 24 hours a day, I have little in the way of color changes, unless I am on my feet at the grocery store for a while. As my crpsII spreads to other limbs, I have noticed that the color changes don't ever start in the limb! I get all the cramps, spasms and pain, however. :( I can't say that the pain isn't related to my other conditions (epilepsy & aids), though... I know the aids is the reason for my inability to heal properly, it's probably responsible for the pain not subsiding with the other symptoms. The meds I am supposed to take for aids would also add greatly to my pain levels... they cause peripheral neuropathies, joint pain and muscle problems of every sort. That's why I am NOT on any... the whole dying of aids thing is a lot more merciful than a lifetime of crpsII. Keep up the good work, Vicc! Without people like you working towards a proper diagnosis, this mess will never be cleared up. |
Vicc,
I am sorry that you think that you are wasting your time answering my questions but I actually did not address these questions to you specifically. As I have said previously I would not still be asking questions if I thought you had supplied me with an answer that I thought explained my queries. You brought attention to me saying that 'the only symptom of RSD/CRPS was pain" and I feel I must address your comment. Long gone are the days when doctors rely on a page full of signs and symptoms before RSD/CRPS is diagnosed. Current well informed doctors look for the possibility of RSD/CRPS if pain is a problem far after it's expected time of healing as early diagnosis and intervention is preferred before the list does get longer. Many people have got better from the early intervention with nerve blocks--the Noigroup web site will validate this and also leaves me convinced that if this was not a disease neurologically based that this would just NOT be the case. I still have many questions that remain unanswered from my last two posts. I guess that is how it will stay. Cheers Tayla |
Vicc
I know your intentions are good but I am not sure what the whole point is here. IRI has been in the RSD research and literature for as long a I have been reading and long before that. You only need to put RSD and ischemia into your google search engine and you get about 35,000 hits. You are not reinventing the wheel or bringing anything new to the table. There is no conspiracy to hide this part of the disease process from us.It is well known to most doctors who are knowledgeable in RSD Why I just pulled this randomly from the google search http://www.rsdinfo.com/rsdinfo3.0/art_6.htm. It is part of the picture but an an incomplete pathology - that is why the docs and we in turn do not have ALL the answers. When I was first diagnosed in 2000 there was a nurse named Heather on these boards who sought HBOT for her RSD and got very good results with it. Another patient followed her to the very same clinic and did not see any change in her condition-same clinic same air pressure - and same consistency in treatments - completely different results. I guess there must be something else at play here. There are many if not hundreds of HBOT centres which offer treatment for RSD especially in big cities. The inflammatory response( abridged big time) which is a big part in all diseases can only be helped with this kind of treatment .Maybe if you got out more you would know this is happening.I know this is not your fault but the internet can sometimes give you a false sense of reality if you follow the information highway and take a left turn when it should have been a right .That can mess up the whole theory:) What troubles me is your refusal to answer questions- only someone who is unsure of their knowledge and doesn't have the answers would feel so threatened by something as innocuous as a question Once you put yourself out there that is part of the deal In peace GnP |
GnP
IRI has been in the RSD research and literature for as long a I have been reading and long before that. I write about IRI because I believe it isn't well-understood. My posts get a lot of hits, and I get comments thanking me for them; I suggest this means I am helping some members better understand this disease process. When I was first diagnosed in 2000 there was a nurse named Heather on these boards who sought HBOT for her RSD and got very good results with it. Another patient followed her to the very same clinic and did not see any change in her condition-same clinic same air pressure - and same consistency in treatments - completely different results. I wrote about the reason for different outcomes and outright failures of HBO on Buckwheat's thread Vascular Issues. Perhaps after reading that you will better understand my explanation for outcomes. What troubles me is your refusal to answer questions- only someone who is unsure of their knowledge and doesn't have the answers would feel so threatened by something as innocuous as a question I asked that questions be limited to what I posted on a the thread on which the question is posed. I think that is reasonable as others may have no idea of exactly what I wrote in another thread. I think my request is reasonable...Vic (added later): I tried Google using "iri and rsd" and the first two links I found were NT and this thread. Using "rsd and ischemia", this thread was the 7th link. Thanks, I needed that...Vic (added even later): Using "rsd and cyanosis". this thread was the 1st link. I'm assuming Google automatically lists the most recent entry, so this thread should fade rather quickly. (added even later): Using "rsd and hbot", this thread was # 4 on page 2. This is fun. |
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