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In Remembrance
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Join Date: Nov 2006
Location: SE Kansas.
Posts: 374
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In Remembrance
Join Date: Nov 2006
Location: SE Kansas.
Posts: 374
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Hi Ada,
It is so good to hear from you and to see this evidence that you are not being totally overwhelmed by the tragedy in your life.
Yes, RSD is an orphan disease, and because of this the research we need has not been done, is very limited in scope and progresses slowly. When we look at the history of this disease we also need to take into account that the kind of research necessary to identify the cause and process of RSD was not possible until relatively recent advances in technology began to appear.
The view that this disease is the result of nerve damage really is the result of ‘no other conceivable explanation’ or of excluding any other possible explanation as making less sense than the one selected; even though most doctors would agree that nerve damage in RSD contradicts much of what is known about nerves and nervous systems. I will have more to say about this in my reply to Mike, and in another post I plan to add to this thread.
To my mind, the near stampede to link central sensitization (CS) to RSD is a recognition of the fact that peripheral nerve injury alone doesn’t fit the known facts about nerve injuries, it isn’t necessary to defend nerve injury if it quickly becomes something involving a process in the spinal cord.
It is sad to see that CS is being used to deny one of the more effective tools in a limited arsenal against RSD pain. Many more RSD patients report significant and longer lasting relief from the pain pump that from the spinal cord stimulator or from pain medications.
This isn’t to say that the pump is a great, or even a good answer to RSD pain; it won’t help at all when symptoms begin in a leg and appear later in an arm, for example, but when pain is intolerable and the pump is the only thing that might work, it should be an option.
Ina, sad to say it is true that effective treatment for RSD, whether that involves a safe method of repeating a therapy that involves long periods of remission or an actual cure, is probably still years away. It could be much sooner if the "experts" ego's or incomes weren't so intimately connected to their explanations for this disease.
I am doing my small part in trying to speed this process by returning to work on an article I think has a fair chance of being published in an admittedly minor medical journal. I know the audience of this journal will be receptive to what I say, and believe I can even teach them something about treating RSD.
Whether published or not, my plan is to make this article the centerpiece of a website that will introduce ischemia-reperfusion injury to a wider group of RSD people than I can reach through this forum. In effect making an end run around the “experts” who almost totally dominate the literature about this disease today.
Mike, I am working on my reply to you. I feel something like a juggler because I have begun writing my article and also on a follow-up post to the one that began this thread. Going from doing absolutely nothing for months to taking on three major projects is a real challenge, but oddly enough I feel up to it (today)…Vic
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The great end of life is not knowldege but action. T. H. Huxley
When in doubt, ask: What would Jimmy Buffett do?
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