Gosh I hate seeing new docs- My PM left because of political reasons-anyway this new doc who is really abrasive said she never heard of tremors with RSD and wants me to have a complete neuro eval!! I am NOT going thru any invasive painful testing! I know its all from the RSD and I guess there is not much that can be done- This doc was such a Bi***I was crying in her office...I hate all of this!! When I told her I new many rsders with tremors she didnt like that at all!

How long has it been since you had a total eval or re eval?
Maybe you could request to only do less invasive tests - what if it is something in addition to RSD?- something that might be treatable?

I'm not taking the drs side at all but just thinking of options.
She could have explained her reasoning to you.

Hi Debbie,

What do all those medical college funds get spent on, huh? So...another doc in need of an education. Take some literature along to her. She can't argue with the movement disorder section in the clinical practice guidelines, I think, you'll find it at:
http://www.rsdfoundation.org/en/en_c...uidelines.html

and some very recent research:
http://www.ncbi.nlm.nih.gov/sites/en...ubmed_RVDocSum

Pain. 2007 May 11; [Epub ahead of print]
Onset and progression of dystonia in complex regional pain syndrome.
van Rijn MA, Marinus J, Putter H, van Hilten JJ.

Department of Neurology, Leiden University Medical Center, P.O. Box 9600, 2300 RC Leiden, The Netherlands.

Complex regional pain syndrome (CRPS) may lead to movement disorders (MDs) in some patients. Reliable information on the nature, chronology and clinical determinants of MDs in CRPS patients is lacking but could provide better insight in to the underlying pathophysiological mechanism. We retrospectively evaluated the clinical and temporal characteristics of MDs in patients with CRPS. Cox's proportional hazards model was used to evaluate factors influencing the onset of MDs. One-hundred and eighty-five patients suffered CRPS in one or more extremities. MDs occurred in 121 patients, with dystonia (91%) being the most prevalent. Sixty-two percent of these patients displayed dystonia in multiple extremities. Patients with dystonia were on average 11years younger and more often had CRPS in multiple extremities. The interval between the onset of CRPS and dystonia in the first affected extremity varied from less than 1 week in 26% of the patients to more than 1year in 27%. The hazard of developing dystonia in subsequent extremities increased with the number of extremities affected by dystonia. We conclude that dystonia in CRPS shows highly variable onset latency and is associated with younger age at onset and increased risk of developing dystonia in other extremities. The delayed onset and progression of dystonia in CRPS may indicate the involvement of a different underlying mechanism, possibly associated with maladaptive neuroplasticity.

Also:
http://www.ncbi.nlm.nih.gov/sites/en...ubmed_RVDocSum
Pain. 2006 Sep;124(1-2):184-9. Epub 2006 May 30.
Severity and specificity of neglect-like symptoms in patients with complex regional pain syndrome (CRPS) compared to chronic limb pain of other origins.
Frettlöh J, Hüppe M, Maier C.

The earlier research about neglect-like symptoms from 2000 is here (it kind of backs up the paper above):
http://www.ncbi.nlm.nih.gov/sites/en...ubmed_RVDocSum

Neglect-like symptoms in complex regional pain syndrome: results of a self-administered survey.
Galer BS, Jensen M.

If she doesn't like that (and docs do hate being wrong...) find another doc!
Sorry you have to go through this, it gets so tedious...sigh...
all the best

It sure is odd how the docs change their minds every few years. When I was dx'ed 14 years ago, the fact that I suffered from horrendous leg cramps and spasms (would ocassionally knee myself in the chin while sleeping... not to mention how many times I hurt Michael, poor guy) was part of the REASON they dx'ed rsd!

The only good thing I can say about it is... as the years go by, they tend to lessen. I don't have anywhere near as many spasms as I used to, and I don't take any meds to help with them, other than the usual Baclofen. (Which I take orally, not by the preferred methods)

Hey, Debbie.. So.. ya have a miss "KNOW IT ALL" huh?? well, maybe your doc. and my doc. are related! sorry but a lot of these Dr.'s are wanna be know it all's. there.. end of story! Hang in there, and if ya can.. and you can.. get another doc. One who is understanding, won't give up on you and one who is compassionate! Now.. I really need to find one whom I just wrote about!! Love, Desi

Thanks for all of your support and research! I don't think she would take it very well if I came armed with articles...I decided I will see the Neurologist but I will not see her again- If I don't like him I will find someone else

Thanks again

Deb