Hi MsL,

Dr. H's puzzles are great aren't they. He is still practicing or is he teaching? Do you know?
My Dr. teaches half the time and practices part time. He is moving to Texas in a couple of years. I'm going to miss him. Won't believe this, I found him in the yellow pages, about 5 minutes from my home. Wild huh. I had another neuro. but he refused seeing me, when our health insurance changed I told him I'd pay in cash each visit, and he said no.. Like I said, some Drs. just don't want rsd patients.

It's Wednesday, how are you doing. Unless I'm really mixed up, aren't you having surgery today. Have been thinking of you all day. Let us know how you are when you get to a computer.. Take care, Loretta

Dear All

I think it is great that people can share experiences and information but it is really important that people don't just jump to conclusions about symptoms they have and assume that they are always part of CRPS. That was the point I was trying to make. I know only too well how difficult it is to find any doctors who know anything about CRPS, in the UK is is even more difficult than in other countries.

With the greatest respect to everyone, there is a lot of misleading, incorrect and out-of-date information on the web. People present hypothesis and opinion as if it is medically proven fact. The issue of limbic disfunction is not something I am necessarily disputing, all I am saying is don't just assume that any cognitive problems you have are definitely a consequence of limbic dysfunction and that it is definitely caused by CRPS - these problems could be happening for any number of reasons including things like stress and anxiety so its important to get them checked out properly.

Again, with the greatest of respect to everyone and I truly don't want to upset anyone, some of the things on Dr Hooshman's site are not entirely accurate and he tends to present hypothesis and opinion as "fact" because of the writing style he adopts. He is retired and there are other people now leading the treatment research into the various aspects of CRPS. As much as you can, I'd urge reading the published medical and clinical papers directly so that you have the underlying information when you then read other people's interpretations of the medical evidence and clinical studies. That is what I do and I find it works pretty well plus it means you can be more authoritative with difficult or un-informed docs!

Hope I'm not upsetting anyone but using other people's experiences based on just the information on a message-board to inform is fine but not as a substitute for medical information, proper diagnosis and and advice.

My goodness Gymjunkie, as I see it this is a support discussion board for rsd patients and as such we should be able to share our experiences and opinions with out being concerned about offending anyone. We are all in the same boat in one way or another.

I'm certainly not offended and would hope no one else would be by an active discussion about our condition and our understanding of it.

You bring up some valuable points of view that should be open for discussion among us. At the same time I think it is important to state that one should not expect lay patients to fully understand all of the published medical and clinical papers that are available out there. Most often I need my doctor to help me understand the full implications of a recently published study. If you are able to fully comprehend all the information that's out there perhaps your limbic system is still relatively untouched by the chronic pain of CRPS and the meds that are prescribed for it

I think it is expected expected that anyone participating in these discussions would have the good mind to do the appropriate research and consult their physicians specific to their individual case.

I did not know that Dr. Hooshman was retired, he had come to give a talk at an RSD forum that my pain clinic participated in back in the late 90's early 2000's. This was prior to my diagnosis but those who participated in the forum were quite impressed with his understanding of RSD/CRPS. As far as misinformation goes I think Anne Louise Oaklander sums it up very well in her recent editorial titled RSD/CRPS: The end of the beginning. http://www.rsds.org/2/library/articl..._editorial.pdf

Mslday
Glad you are not offended!

Through the course of my CRPS journey I have had periods where I have found my memory was poorer and I was slower but these were temporary episodes which coincided with drug-changes or periods of acute stress prior to one test or another. I have no cognitive impairment but do have, amongst other things, chronic pain (original site and mirror spread), vascular problems, temperature/colour problems, swelling and severely disabling movement problems (full body) which are regarded as being at the more extreme end in terms of CRPS. Just shows that we really do all get a different "bag" of symptoms. I have also been through the awful depression that the diagnosis can bring but have been fortunate enough to recover my pre-CRPS positive and cheery mood which I find helps probably more than anything else!

I have never stopped working in spite of my CRPS and all of the horrible problems it has brought with it. I work full time as the head of legal in a big company. I am very obviously physically disabled but fortunately my mind is as sharp as ever! I thank my lucky stars that I have a desk job and an office environment where my physical disability doesn't prevent me doing my job. I think the type of research and analysis skills I use in my job make it easier to read, understand and interpret the clinical papers and the other articles. I just much prefer to go to the source data and research it from there. If there is medical stuff I don't understand, I research that too. It is just how I am!!!

I'd love to believe that we really were at the end of the beginning. Sadly, there are many much more common neurological disorders which are just as poorly understood as CRPS in spite of massive amounts of research carried out over decades. Today in the UK, 33% of people with neurological problems cannot even be given a diagnosis for their symptoms after testing is carried out. We understand so little in the neurological field! Even in 2008 there are still doctors who don't actually believe that this condition exists and there are people who remain undiagnosed and in misery for years. CRPS is not common enough to attract significant levels of research or funding for research. Whilst there is no doubt that useful things are going on, I am not sure how the current state of the science could be considered to be the end of the beginning just yet.

Anyhow, that is all a bit heavy and off topic so I'm off to do some work instead!