Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 12-04-2009, 09:00 PM #1
SandyRI SandyRI is offline
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Join Date: Dec 2008
Location: Rhode Island
Posts: 1,056
15 yr Member
SandyRI SandyRI is offline
Senior Member
 
Join Date: Dec 2008
Location: Rhode Island
Posts: 1,056
15 yr Member
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Originally Posted by keep smilin View Post
I have always said these 2+ years since being diagnosised with my RSD that I would never let it control my life or change my life..Well after 25 years with the same company..I finalized my leaving yesterday due to my relentless RSD.. I believe one could say RSD did win.... Anyone have some uplifting advice and just a how do you do's..I sure could use them now... This is such sadness in a big way...
First - let me start off by saying how very sorry I am. I was in the same place as you five and a half months ago - June 19th to be exact. I still plan to return to my job. I will NEVER give up trying to get better.

I am going to try to copy and paste what I wrote tonight in reply to another post. In short, it is critically important that you get to the very best RSD doctors in the very best medical centers ASAP. No matter how far you have to travel. In the long run it will be worth it. Don't waste your time on small time pain management docs or anesthesiologists that don't know what RSD is, or how to treat it, or what drugs to prescribe, or what procedures to try. You could end up messing yourself up for a long time, in a lot more pain than you need to be, and with your RSD spreading. I know because it all happened to me.

This is what I wrote (In the thread about it being cold in the Northeast):

Beg of Copy: [If you have a doc that is offering RFA then you need a NEW ONE!!

You are fortunate you are in NJ, there are better docs available within driving distance where you live than almost anywhere else. Yesterday my husband and I saw Dr. Philip Getson in Marlton, NJ (exit 4 off the Turnpike). He is AWESOME!! I waited a few months for the appt, needed to organize and submit the paperwork by myself. For me it was a 270 mile drive it each direction, since you live in northern NJ it would be much easier for you than that. You also have easy access to NYC. I have seen a really good doctor at St. Luke's/Roosevelt Hospital, I was able to get into his office for an appt within a month or so of calling. But again, my husband and I drove 160 miles each way to get there.

I obtained a list of doctors that offer ketamine from the RSDSA (Jim Broatch) and started calling the closest hospitals to RI until I found places that would take me.

The biggest disappointment for anyone that lives in New England is that the Beth Israel is not taking any new patients into their ketamine program. But, in addition to that, their doctors are hands down the meanest bunch I've come across in the 3 years since I've become sick. The report they issued regarding my diagnosis could almost be deemed fraudulent, in that they called my symptoms "myofascial pain syndrome," yet listed meds and other recommendations consistent with an RSD diagnosis....why they are screwing patients is beyond me. The administrative team at the hospital shut down the ketamine program to new patients because insurance companies were refusing to pay for it, so the doctors are retaliating by taking it out on the helpless patients??? In addition, they missed a key part of my problem that the docs in NYC and NJ found, so in the end they're not as good at detecting things as perhaps they could be.

Anyway - (pardon me for the rant, my experience at the BI was incredibly tramatic for me) - until I got out of New England and in front of the much better doctors in NYC and NJ I did not get a clear understanding of my RSD or a good analysis of my meds. I would urge you NOT to wait to get to the very best doctor, with the very best RSD credentials, that you can. Get the list of ketamine docs from the RSDSA and start calling. Not only do these guys know ketamine, but they know RSD. They can help figure out what's wrong with you, advise you on the best mix of medications, and help you determine what procedures (i.e. - blocks, infusions) will relieve your pain in the best manner possible. And in the end, hopefully you will become painfree ASAP.

I still have an appointment pending with Dr. Schwartzman in late June 2010. Dr. Getson, who works often with Dr. S, urged me to keep it. He said that you can never see too many specialists, or find out too many things, about your RSD.

If you have any questions, please let me know. XOXOX Sandy] End of Copy

Good luck to you. XOXOX Sandy
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SandyS (12-05-2009)
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