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 07-05-2015, 06:42 PM #1
swanny8199 swanny8199 is offline
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Default CRPS specialists? Do you have one?

Hey everyone!
Have you had good luck with CRPS specialist? If so, can you share your success story? I'd be glad to travel anywhere in the US for someone who knows how to treat this ugly disease!
Thank you in advance!
Swanny
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Old 07-06-2015, 09:46 AM #2
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hi swanny. i don't think there is an actual dr who specializes in rsd yet but i have been seeing a great pm dr for over four and a half years and he has helped me so much in dealing with the constant pain that rsd brings to me. if i were you i would check out pm drs in your area and neurologists too and visit a few to get some idea of how much they know about rsd. then you can make a decision as to whom you want to see. i hope you find someone who can help you soon. take care.
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Old 07-06-2015, 10:52 AM #3
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Dr. Pradeep Chopra in RI specializes in CRPS and he is highly regarded. I would've traveled to see him if I was not making improvements with my PM and plan here. There is also a Dr. Philip Getson in NJ who specializes in CRPS.
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Old 07-07-2015, 09:50 AM #4
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Dr Chopra is great I have seen him. My RSD doctor is actually a palliative care doctor he treats mostly cancer and whoever is in pain while in hospital. I met him when I went into the hospital multiple times from flares I was ending up there every 2-3 weeks and he would help me with ketamine infusions and higher iv pain meds. At the time I was seeing getson for the ketamine infusions but I lived 2hrs away from him so that's why I would go to the hospital closer to me and he ended up dropping me because of Dr Baxter at the hospital. So even though baxter at the time hadn't seen such bad RSD he believes in living a life in as less pain as possible so we went through different meds before we found a combination that helped keep me out of the hospital much longer. He has become my angel when I come in for a flare he will even leave his practice which is in the same hospital and come and see me in the ER to make sure that I get what I need once Iam admitted and I have even gone through 4 surgeries with him and he talks with all the doctors on what needs to be done which is always ketamine and then whether I need epidurals, block, or even ketamine comas and as soon as the surgery is over he is waiting to see me when I get out and will even stay around for hours to watch and see what need for pain control. My mom said even when I was in a coma he sat and talked to me holding my hand telling me everything will be ok. he treats me more like a daughter there have been many times he has nearly come to tears because of how bad things are as I have gotten 7 other diseases and 2 are very bad and he was the one that had to tellme my body is slowly dieing and I could see he didn't want to but he still fights for me if any doctor or nurse does or says anything that hurts me or bothers me as some have said some mean things well doctor baxter each time gets 2 other doctors and they go to the person who I had the issue with and they basically get in big trouble which isn't what I mean to happen but they do need to know just cause they cant see my RSD its very real and baxter makes sure they know it. Out of the 13 states I have seen and 123 doctors he has been the only who wants to understand. Even though when I became his patient he didn't know all about rsd he went and learned everything he could so he could help me. So you really don't have to find a doctor that call themselves RSD specialists as some aren't good at all a few didn't even know it went full body, its just finding a doctor who is willing to listen, understand, and learn and help you no matter what you might need for help.

Samantha
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Old 07-07-2015, 11:35 AM #5
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Quote:
Originally Posted by swanny8199 View Post
Hey everyone!
Have you had good luck with CRPS specialist? If so, can you share your success story? I'd be glad to travel anywhere in the US for someone who knows how to treat this ugly disease!
Thank you in advance!
Swanny
Hi Swanny,
If you're anywhere near Asheville, NC look up a neurologist by the name Dr. A. Gupta. She's very well studied in treating this monster...
May you have success in your search...
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Hope for better days.....
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Old 07-07-2015, 01:21 PM #6
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Quote:
Originally Posted by RSD ME View Post
hi swanny. i don't think there is an actual dr who specializes in rsd yet but i have been seeing a great pm dr for over four and a half years and he has helped me so much in dealing with the constant pain that rsd brings to me. if i were you i would check out pm drs in your area and neurologists too and visit a few to get some idea of how much they know about rsd. then you can make a decision as to whom you want to see. i hope you find someone who can help you soon. take care.
Hi. I'm new to this forum, and this is my first response! I'm now looking for an RSD specialist and a pelvic pain management specialist in southern CA, closer to San Diego than LA.

When I lived on the east coast I went to Dr. Robert Knowbler. He is a wonderful RSD (and MS) specialist. I saw him for years, even though he was 3 hours away.

Good luck!
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Old 07-07-2015, 09:12 PM #7
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Swanny, the only doctor that specializes that I know of is Michael Stanton-Hicks, and he's semi retired, he just does research now. He was wonderful, and my life isn't the same without him. I am looking for a new doctor too. It's been an absolute nightmare.

I do know of a doctor in Oklahoma, he was the first to diagnose me.
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Old 07-07-2015, 09:13 PM #8
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Originally Posted by alaska49 View Post
Dr Chopra is great I have seen him. My RSD doctor is actually a palliative care doctor he treats mostly cancer and whoever is in pain while in hospital. I met him when I went into the hospital multiple times from flares I was ending up there every 2-3 weeks and he would help me with ketamine infusions and higher iv pain meds. At the time I was seeing getson for the ketamine infusions but I lived 2hrs away from him so that's why I would go to the hospital closer to me and he ended up dropping me because of Dr Baxter at the hospital. So even though baxter at the time hadn't seen such bad RSD he believes in living a life in as less pain as possible so we went through different meds before we found a combination that helped keep me out of the hospital much longer. He has become my angel when I come in for a flare he will even leave his practice which is in the same hospital and come and see me in the ER to make sure that I get what I need once Iam admitted and I have even gone through 4 surgeries with him and he talks with all the doctors on what needs to be done which is always ketamine and then whether I need epidurals, block, or even ketamine comas and as soon as the surgery is over he is waiting to see me when I get out and will even stay around for hours to watch and see what need for pain control. My mom said even when I was in a coma he sat and talked to me holding my hand telling me everything will be ok. he treats me more like a daughter there have been many times he has nearly come to tears because of how bad things are as I have gotten 7 other diseases and 2 are very bad and he was the one that had to tellme my body is slowly dieing and I could see he didn't want to but he still fights for me if any doctor or nurse does or says anything that hurts me or bothers me as some have said some mean things well doctor baxter each time gets 2 other doctors and they go to the person who I had the issue with and they basically get in big trouble which isn't what I mean to happen but they do need to know just cause they cant see my RSD its very real and baxter makes sure they know it. Out of the 13 states I have seen and 123 doctors he has been the only who wants to understand. Even though when I became his patient he didn't know all about rsd he went and learned everything he could so he could help me. So you really don't have to find a doctor that call themselves RSD specialists as some aren't good at all a few didn't even know it went full body, its just finding a doctor who is willing to listen, understand, and learn and help you no matter what you might need for help.

Samantha
Samantha, I'm sorry you're suffering. I am glad you've got a doctor that treats you so well, and actually cares about your well being. Believe it or not, that's really rare. Hold on tight to that man, and don't let go. Hugs to you
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Old 07-08-2015, 03:02 AM #9
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Originally Posted by jraslevin View Post
Hi. I'm new to this forum, and this is my first response! I'm now looking for an RSD specialist and a pelvic pain management specialist in southern CA, closer to San Diego than LA.

When I lived on the east coast I went to Dr. Robert Knowbler. He is a wonderful RSD (and MS) specialist. I saw him for years, even though he was 3 hours away.

Good luck!
Some in your area travel to USC to see Dr. Richeimer. http://www.helpforpain.com/

There are also doctors at UCI that are supposed to be very good--Dr. Soloman Liao has been mentioned here on NT. http://www.ucirvinehealth.org/find-a.../solomon-liao/

And lastly, there is also Dr. Nancy Sajben in La Jolla. She has been a big advocate of low dose Naltrexone. I don't believe she takes insurance though. http://painsandiego.com/
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Old 07-08-2015, 07:45 PM #10
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Dr. Peter Moskovitz is an RSD specialist and sits on the board of the RSDSA website. He's amazing, but he is retiring in the near future.
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