Originally Posted by dshue

Hey --

Thanks Sandy. Sorry for your similarly dismal experience.

But having just finished writing an accurate and disparaging missive to my 'doctor', I have to tell you, I feel so much better.

-- Dennis

Originally Posted by SandyRI

Dear Dennis,

I can SO relate to your frustration and anger.

Perhaps he trained with the neurologist I saw a few months ago in RI at my GP's insistance because I was suffering with such severe head pain he wasn't quite sure what to do with me? That neurologist charged me a $25 co-pay to hear basically the same thing - in his report he stated "I do not have an organic alternative diagnosis to explain her pain, and wonder how much of this is caused by depression." This is because at the time I saw him he didn't observe any autonomic changes that he expected to see with, as he puts it, "chronic RSD, such as sweating, hair loss, changes in skin turgor, temperature and color, osteopenia or edema."

BTW - what does "organic" mean?

I recall him being upset with me because I did not want to add Tegretol to my list of meds. I had tried Lyrica and Neurontin and hated them both. I already take Topamax for head pain. And furthermore, one of my brothers suffered from a seizure disorder when he was younger and was on Tegretol for a while - it made him lethargic and caused him to gain weight. No thank you.

I only saw this dr. because my GP wanted me to - he prescibes my opiods and I've needed them increased over the summer because my pain has been severe on a number of occasions. Before I agreed to the appt with the neurologist, I think I SHOULD have asked whether the doc had any experience with RSD, how many RSD patients he sees a year, etc. There are several other neurologists in his office -perhaps one of them would have been better qualified to treat me. Live and learn.

My GP has asked me AGAIN to try to find a neurologist because he needed to increase my meds 2 weeks ago. A RI FB page had a suggestion for a RI neurologist, so I called his office. I asked the receptionist if the doc had experience with RSD and how many patients he took care of, etc. I also asked my GP if he had heard anything negative, and he hadn't. That's a lot more due diligence than I perfomed the first time around.

Not all doctors are alike. My GP wants me to see neurologists, that's the only reason I'm persisting. But the bulk of my care has been provided by a PM doc in Boston at ST. Eliz that I really like a lot (7 SGB, 1 LB, 2 lidocain infusions). He's board certified in both pain management and anesthiology, and is a Doctor of Osteopathy.

I think you may find that many people on this board use PM docs for their care.

Good luck, and never, never give up. Sorry you had such a *edit* day.

Sandy

Originally Posted by fmichael

Dennis -

What you went through sounds hideous. And of course the guy was right about chronic CRPS being in your head, just not in the way that he meant.

See, e.g., "Contralateral thalamic perfusion in patients with reflex sympathetic dystrophy syndrome," Fukumoto M, et al, Lancet 1999 Nov 20; 354 (9192):1790-1 (PET scans showed substantial variation in thalamic perfusion of the side contralateral to the painful limb, with variations are related to time from the onset of symptoms, suggesting that the thalamus undergoes adaptive changes in the course of this neurological disorder) copy attached; "Chronic Pain with Beneficial Response to Electroconvulsive Therapy and Regional Cerebral Blood Flow Changes Assesed by Single Photon Emission Computed Tomography," Fukui S, et al, Regional Anesthesia and Pain Medicine, Vol 27, No 2 (March–April), 2002: 211–213 (following Fukumoto, thalamus of 50 y.o. woman with chronic CRPS was measured before and after ECT treatments, which resulted in pain pain being reduced to the point that VAS levels of post-ECT pain severity were rated 1-2 and rCBF in the thalamus was increased significantly increased after ECT, suggesting that rCBF change may be related to the analgesic efficacy of ECT) full text at http://www.rsds.org/2/library/articl..._Yoshimura.pdf ; "The Brain in Chronic CRPS Pain: Abnormal Gray-White Matter Interactions in Emotional and Autonomic Regions," Geha PY, et al [Apkarian AV], Neuron 2008; 60: 570-581 (finding, among other things, a significant reduction in the corticol thickness of the anterior insula, one of the key receptors of signals in the cortext from the thalamus, and linked with emotional regulation) full text at http://www.rsds.org/2/library/articl...aliki_etal.pdf

But I suppose it's too much to expect that the guy would have been caught up on his reading to the point that he would be familiar with a decade old article in The Lancet.

That said, a referral from a great pain psychologist to an MBSR instructor (Mindfulness Based Stress Reduction), a program with a substantial element of meditation that has been training teachers across the country out of the Univ. of Mass. for the last 30 years, http://www.umassmed.edu/Content.aspx?id=41252 has been the single best thing that's happened to me since I got this thing. It was there I first learned that while pain is all too often pain unavoidable, struggling against it just compounds - and in fact is - the suffering we experience. Plus I've made some really great friends in that community.

And of course not all neurologists are terrible, look at Robert J. Schwartzman or Anne Louise Oaklander or even my own neurologist, who left the faculty at UCLA where he was a full professor when, I was advised by someone else, UCLA wasn't interested in funding a rehabilitative program.

And for what it's worth, UCLA's reputation around town for treating chronic pain is dismal. While they may be the go to guys for stroke or brain cancers, they persist in being in the dark ages when it comes to pain. It must not generate enough research grants.

So to close with an apt and infamous bit of Dog Latin, illegitimi non carborundum.

Mike

Originally Posted by fmichael

Dennis -

I suspect we're not the only people in this little group who see Dr. Richeimer. And I can recommend some great MBSR instructors, depending on what area is convenient for you.

The sad truth though is that I still "believe" in the depth of UCLA's Neurology Dept. on more traditional issues and am in fact working through my neurologist to see someone on a matter that doesn't appear to really have anything to do with RSD but appeared ironically enough following a funky MRI that came back a few weeks ago when I wanted to see if my anterior insula could be imaged on a T3 machine. Nothing horrible, just worrisome, and the alternative to UCLA is a $600/hour neurologist at Cedars with whom I will consult in the interim and who doesn't accept insurance.

So it goes.

Mike