Nothing medicare can do about it. My wife's doctor of 5 years dumped her even though I was paying for the visits out of pocket because the doc does not want medicare to question her about charges made to medicare such as $75 urine tests that turned out to be $600 instead. Or ketamine shots that do absolutely nothing and has gotten this doctor in a mess. She just does not want to draw attention I suppose. Thanks for the blesses!

Yes it does seem like a battle every single time. So much so I found myself crindging every time the doc suggested something that the wife did not like. In which I supported her 100%, it was the response from the doctors that scared me such as "nothing I can do for you." We've gotten into arguments in how she should approach and speak to doctors in order to receive some support. Although we went through hell with losing coverage, close to bankruptcy and then her getting medicare and a hefty settlement from SSDI, she now finds herself with no doctor. The high stress never ends it seems and stress is a big no no pertaining to RSD.

Vrae, who are these cutting edge doctors in California?

I am away from home th afternoon. But get send u a copy of what I sent tomorrow. I will also send u contact info. On your state policies. I just figure if we don't spEak up for ourselves no one else will.

If I could see anyone about this condition it would be University of California, Los Angeles ... Dr Joshua Prager, MD, MS, California Pain Medicine Centers at UCLA: Center for the Rehabilitation of Pain Syndromes (CRPS)
Reflex Sympathetic Dystrophy Institute would be my first choice.

Prager is leading in research world-wide, but is not bound by study restraints and is customizing treatments for individuals. He has learned from the studies/trials that Dr. Robert Schwartzman, Anthony F. Kirkpatrick, MD, PhD, and H. Hooshmand, M.D. have done and has started to customize ketimine treatments and is having good results. here's a video http://www.youtube.com/watch?v=7Qa6gMRWM8c

Dr Joshua Prager is a contributor to the site that alt had mentioned (rsds.org). here's something you could take a look at. about half way into the pdf he get's into ketamine http://rsds.org/2/library/CRPS%20%20...DSA_Prager.pdf

Here is his website http://www.californiapainmedicinecenter.com/profile and the info on treatments http://www.californiapainmedicinecenter.com/general

I know you said that ketamine wasn't helping your wife, but perhaps the doc just simply didn't know what he's doing... maybe? I can't get over the "nothing I can do for you" statement from her doc. And part of me wants to say to him... cool, now send me to someone who can do something.

I completely understand the financial hardships that come with this. I am in BK after 10 years of being self employed. I lost my health ins last year, and am now part of the "system". I was told by SSA that I don't have enough work credits to get disability because I was self employed and I had business losses from the startup phase and was no longer eligable. had I filed a few years earlier, I'd been good, but nope, I waited too long (denial). It's a little unreal to me. I have worked since I was big enough to ride a bike and throw a paper. 30 years of paying in and I don't have enough credits... what?! I was self-employed, put others to work too, and I have been punished for all the damn money I put into my company to try and make it successful. Anyway, yes, i so relate to what you are saying about the stress of life, and the stress of the condition, and that all of which just cause more physical pain.

I guess i've gotten a little long winded on these responses. I'm just damn frustrated with the lack of care and understanding from the medical community. And it's no easy thing to feel like you've lost ... nearly everything. But I will say this, praise God that I have my husband who is loving and compassionate. I feel sure your wife feels the same way. It is a blessing to have someone walk this walk with you. I pray your wife finds someone who can truly help her. Who truly cares, and is educated in the best approach.

has anyone ever contacted the AMA?

no, i haven't.

I was just recently diagnosed with RSD and have a heck of a time finding a doctor that will take me on, as well as my insurance. We waited FOUR WEEKS for a doctor to send over our records and have the new one review them and then he says he cant take on my case because I have RSD. So now we're looking for an RSD specialist, can anybody recommend one? We're in Colorado. Also, does anyone have any tips or tricks to helping ease the pain? I have pain medicine when it gets bad, and we've tried heating pads and ice and elevation, but they dont seem to help much. Especially the heating pad, seems when I use it that my muscles start to go crazy and spasm. Anyone have any better methods?

I was in treatment with Dr. Prager but he is no longer on my employer's MPN so I cannot continue with him, which is unfortunate because we were mid-treatment. It's frustrating now because I have now gone to EVERY dr on my employer's MPN and NONE of them have EVER treated a patient with CRPS, but my primary treating doc is very creative and keeps trying to help me find the best one now that we can't use Prager and is a HUGE advocate. She has written Dr. Prager on my behalf and gotten him to write letters to my new pain dr and collaborate without pay on a care plan for me. Unfortunately even he thinks I'm at the point where I would benefit from a SCS, which I'm pretty leery of, and the person who would be putting it in has NEVER done one for CRPS, or treated a CRPS patient, but he has been collaborating without charge with the new dr to educate him just a bit (that part has been his amazing nurse practitioner, Erica.)

Any hospital, anywhere, (I worked in one when I was injured) the staff is NOT educated on CRPS, so you HAVE to advocate for yourself constantly. I had an unrelated to CRPS hospital stay in November of last year and I had to have a sign hung not to do blood draws, ivs, or blood pressures on my affected limbs, and every regular doctors appt for my regular health stuff not related to CRPS I have to explain my condition and advocate for not touching etc. Finding medical staff who know about and understand CRPS is difficult. My primary worker's comp dr who treats me for the CRPS has had to have inservices and teach her staff to place me in warmer rooms, or let me wait in my car (her office is REALLY cold), to never touch me, etc.

Good luck in your search for someone to treat you that is logistically possible, because where I live, even though I'm a few hours from Los Angeles where there are a lot more treatment options, I still am barred from that for financial reasons.

So sorry to hear about all the hassle. and boy is this Dx a HASSLE!

You might try PM Dr.Vitaliy Y.Domashevich, MD, Aurora, CO (I think he offices in Englewood too). He treated me for a while, and I will be reaching back out to him next month when my new insurance kicks in. He did a decent job of keeping pain under control and did a fantastic job as my anesthesiologist on a knee surgery I had to have after being Dx with CRPS II. I do not have a good referral for a Nuero doc yet. I am waiting for a friend of mine who is a PA to suggest one. Keep me posted if you find one. Best of luck!

It’s ridiculous, that’s for sure!