[QUOTE=Neurochic;952342]Djhasty
The whole concept do CRPS developing in stages (called "staging") is out of date. It worries me somewhat that your doctor has told you that you are in"stage 3". All of the modern texts and thinking on CRPS is that the myriad of different symptoms will develop in different people at different times and they don't follow a pattern which correlates in any way to the historically defined different stages. I raise this not to be smart but because it raises a question mark about how up-to-date and current your doctors knowledge actually is. /QUOTE]

I agree with much of what you said here.

I realize that government run institutions can be behind. Unfortunately, this NIH site describes me quite well. ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm

In stage three the syndrome progresses to the point where changes in the skin and bone are no longer reversible. Pain becomes unyielding and may involve the entire limb or affected area. There may be marked muscle loss (atrophy), severely limited mobility, and involuntary contractions of the muscles and tendons that flex the joints. Limbs may become contorted.

I believe the stages noted on this NIH site and used by my Neurologist indicate severity of symptoms, rather than measurements of time. Short, medium, and long-term periods of affliction are not a consideration. Most likely acute, dystrophic, and atrophic are at issue, with the final stage also in the atrophic stage but involving the internal organs. A quick search on the web brings back lists of sites noting the stages of RSD/CRPS. The accuracy of the information can remain a debate here. As you note, it is up to each of us to do our homework, and not everything we read on the net is up-to-date and accurate. Also, in my case, when being considered for disability, stage (severity) of the disorder was taken into consideration by the reviewing committee. That was 2 plus years ago.

The RSDSA.org site does contain a lot of really good information. I agree. I have used it extensively, especially at the time of diagnosis. Anyone can use this resource to find valuable information.

Here in mid-size Omaha, I feel my best bet is with the University of Nebraska Medical Center and my Doctor who is a Board Certified Neurologist. She diagnosed me before I had heard of it. I believe her view to be up-to-date. As far as being on the cusp with experimentation regarding CRPS, maybe not. I do believe she is providing me the best care that Omaha has to offer.

I admit I am not always my best advocate. Much of it was my own denial. I left the Doctor's office stunned and confused. When I look back, I believe I have had CRPS for much longer than anyone has expected. I had/have many of the symptoms. Medical tests showed it. 2 plus 2 didn't happen for me until it was almost too late. Without proper medical care, what started in my left foot, took over my left side including my eye, both feet, legs, hips, and bladder.

Neurochic, your input is always valuable. I enjoy reading your responses. Thank you for taking the time.