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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 09-09-2008, 08:38 AM   #1
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nasta25 HB User
rsd doctors

rsd doctors

 
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Old 10-06-2008, 04:37 PM   #2
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Re: rsd doctors

Hi nasta,
The best doctor I know of is in Philadelphia...Dr. Robert J. Schwartzman at Drexel School of Medicine. The wait time is about 1 1/2 years to get in. We just saw him today for the first time. When we made the appt. We couldn't believe how far off it was...16 months. We weren't sure we could wait. It was worth the wait.

 
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Old 10-07-2008, 12:42 AM   #3
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Re: rsd doctors

Hello,
Were you needing doctors in the Baltimore area? Wasn't sure, because all you wrote was "rsd doctors".
I live in San Diego County so not much help, but hopefully you'll find somebody here on the boards from your area that can help you. I would think John Hopkins would be a great place for you to search for an RSD doctor. I read on here all the time about Dr Swartzman, but who can wait a year and a half if they're new with this disease? I've also read many times on here that doctors haven't heard about RSD. In my experience, I haven't encountered that. My experience is that all the doctors I know or see, and my daughters doctors also know about RSD. Even my other daughter's pediatrician knows about it and knows it's usually treated with Lyrica or Neurontin. Maybe it's because San Diego is so large and we've got UCSD here and stuff. I feel badly for anyone who gets jerked around because it's so vital that we're treated.
Take care, and I wish you the best of luck in your search -
Deb

 
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Old 10-07-2008, 10:51 AM   #4
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Re: rsd doctors

Thank you for you're input.

I still have not found a doctor that does specialize in RSD. The main problem I have encountered is docrtor's will say something along the lines that they have sucsessfully treated RSD patients but when it acually comes down to it, they mean they have gotten the pain under control - for now. One did a partial EMG test (partial meaning he stuck me the electricaly charged needle only about 1/4 of the times he was supposed to in order to get the correct nerve diagnosis) and when it came back normal told me I was perfectly healthy, the same doctore also gave me a sympathetic nerve block but for reasons unknown, it made the pain much worse(?). I did some research on my own and I do not remember the web site but it did say the in some RSD patients, a phenonenon called Neronal Plasticity can occur if you have had the disease disease for too long (it happens because even though the main nerve causing the pain has been placated, the nerves surrounding it remember the pain and take over, hence increasing the pain). Well anyway despite the fact that I had every symptom of the disease (splotchyness/redness, weird skin, gross nails, sensativity to heat/cold, excessive sweating and the giveaway - a 3 degree (lower) temp. diff. form the other leg), he sent me back to my Ortho surgeon, telling me that it must be something else who in turn told me he had no doubt I had it.

After that I saw three more doctors who all agreed it WAS RSD but where of no help as the only thing they are able or should I say willing to do is medicate or incorporate a spinal cord stimulator (which is not an option for me right now as I have 6 bulging discs and a 15 mm lesion in my middle ear, both of which still have to be addressed).

I decided to research before actually going to the new doctor. You would not believe what some of them said! Some would not take me in at all - big surprise, one told me he had treated 6 RSD patients and only one did not fully recover (I read on the RSD hope web site that this is a sign that the doctor has no idea what he is up against).

I am going to at least call Dr. Schwartzman and get on the waiting list, what harm could it do??

Can you tell me if he takes insurance? I know some RSD specialist do not...

And do you have his number?

 
Old 10-12-2008, 08:46 AM   #5
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martra1025 HB User
Re: rsd doctors

Nasta,
I think you should call Schwartzman and get on the list. We were very disappointed when we made the appt. and it was so far away. We couldn't believe they would make an RSD patient wait so long. But, we survived and it was worth it. Nothing to lose by scheduling the appt. The year and a half is going to come either way and you can still look and research while waiting. Good luck.

 
Old 10-12-2008, 09:38 AM   #6
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nasta25 HB User
Re: rsd doctors

Hey Martra,

I think I will. Thank you for the advise. My parents where actually out to diner the other night and they where talking about the disease and if you will believe it, one of the people who where out with them was a doctor that specializes in the RSD (er at least says he does). So I have been collecting all my new and old doctor's notes and trying get them to him in the mean time. But, I am at the point that I have seen 12 doctors and no real help yet so I am not going to get my hopes up and set myself up for a disappointment.

Do you happen to have Dr. Schwartzman's office number? If not , that's fine I'm pretty sure I can find him on the net as he seems to be so popular....

Thanks again.

 
Old 10-12-2008, 12:08 PM   #7
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Michelle94 HB User
Re: rsd doctors

Marta,
I see Dr Schwartzman myself.. I felt the same way when I first made the appt.. I had to wait 2 yrs. but, in the mean time. My orthopedic dr called Dr Schwartman and asked what cocktail of meds he would like him to start me on.. From there I took the meds until I saw Dr S... He knows his stuff, I'll tell you that much.. It was well worth the wait..
It's been about two yrs being treated by Dr.S.. I've gone through several lidocaine infusions.. I have mention this one to many times on this board lol lo.. But I swear by it.. I went from not being able to touch my feet on the ground cause it hurt so bad to going back to work... Yes the RSD has spread to all four extremities and part of my torso but by life is so much better now...
What does Dr S have in mind for you? My next step for me if the lidocaine didn't work the ketamine.. but I am crossing my fingers and hope this it just stays the way it is..
Nasta,
Martha is right.. He is one of the best.. It worth making the appt.. and once your in there you can talk to him, his nurse etc at any time.. They all are so helpful...
The reason why the long wait with him.. There's just not enough drs out there that do the treatments that he does.. He has people coming from all over the US. Keep in touch..
Love to hear Martha when he has plained for you..
Michelle

 
Old 10-12-2008, 12:11 PM   #8
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Michelle94 HB User
Re: rsd doctors

Nasta,
I am not sure we can give the number out. but if you just search is Name and RSD at Drexel university His address and number will show up...
Make sure you stay with a PM dr or primary.. DR S does not give out meds.. meaning he may suggest what you should take but he will not refill them. He has to many pts to be doing that..
Michelle

 
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