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 12-15-2009, 10:26 AM #1
RNcrps2 RNcrps2 is offline
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Default Angry, frustrated and sad

Excited waiting for Dr. S appt. in March and yesterday appt cancelled b/c temp. filled me in on wrong day. next appt 2012. Tired of crying. Spread from arm to feet and they burn and ache so bad. I think i was holding on for Dr. S to tell me something positive. Called Dr. K in Fort Wash. and wont take me b/c w/c! Cried again. I like my pmdr. but i want expert with many years experience who specialize in RSD to give an opinion for tx. W/C denies payment- won't cover feet. Guess they really don't know RSD. Frustrated. Sad. Need help. I recently saw a list of Dr. in USA who are specialize in RSD(thought it was on RSD website) but cant find it. Anyone know? momof4
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Old 12-15-2009, 02:24 PM #2
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Sorry to hear such bad news. 2012 is a stretch for sure. Check this site out and good luck, RNcrps2.

http://www.rsds.org/1/organization/index.html
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Old 12-15-2009, 02:51 PM #3
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Default Where do you live?

Sorry you are having such difficulty. I saw you mentioned wanting to see DR. S., which I know is in philadelphia and you also mentioned a doctor in Fort Washington, but I don't know if you are referring to FW, PA. If you are from this area, I have a great RSD doctor in Jenkintown to recommend.

Vanna
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Old 12-15-2009, 03:30 PM #4
AintSoBad AintSoBad is offline
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Quote:
Originally Posted by vannafeelbettr View Post
Sorry you are having such difficulty. I saw you mentioned wanting to see DR. S., which I know is in philadelphia and you also mentioned a doctor in Fort Washington, but I don't know if you are referring to FW, PA. If you are from this area, I have a great RSD doctor in Jenkintown to recommend.

Vanna
Yes,
Doctor Knobler is in Fort Washington PA.
True, he takes no insurance. And the first consult is expensive.
(I think you should speak with your WC lawyer)
The problem is, the insurance companies DO KNOW RSD!
They know it's a lifetime of problems.

But, what Dr S. office did to you, is unfathomable!
I'll bet, that Dr. S has No Knowledge of it!

Dr Schwartzman, and Dr Knobler were partners @ Jefferson for many years.

Vanna, let's hear that other name?

Thanks.

pete
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Old 12-15-2009, 05:05 PM #5
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I am so sorry. Don't these people have any clue what they do to people when they screw up like that????

I have an appt in June 2009. But I am almost certainly cancelling it because I hope to be treated by Dr. Getson in Marlton, NJ in the next few months IF WC approves it. Now that I have found Getson, and like him so much, I doubt that I will see Dr. S. because of the $$. I had to pay $400 out of pocket for Getson's appt.

I wonder if something could be worked out - like I could give YOU my appt....I will PM you....I also have a list of ketamine docs that I got from Jim Broatch of the RSDSA, when my son gets home I'll have him help me scan it and send it to you.

XOXOX Sandy

Quote:
Originally Posted by RNcrps2 View Post
Excited waiting for Dr. S appt. in March and yesterday appt cancelled b/c temp. filled me in on wrong day. next appt 2012. Tired of crying. Spread from arm to feet and they burn and ache so bad. I think i was holding on for Dr. S to tell me something positive. Called Dr. K in Fort Wash. and wont take me b/c w/c! Cried again. I like my pmdr. but i want expert with many years experience who specialize in RSD to give an opinion for tx. W/C denies payment- won't cover feet. Guess they really don't know RSD. Frustrated. Sad. Need help. I recently saw a list of Dr. in USA who are specialize in RSD(thought it was on RSD website) but cant find it. Anyone know? momof4
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Old 12-15-2009, 07:10 PM #6
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Quote:
Originally Posted by RNcrps2 View Post
Excited waiting for Dr. S appt. in March and yesterday appt cancelled b/c temp. filled me in on wrong day. next appt 2012. Tired of crying. Spread from arm to feet and they burn and ache so bad. I think i was holding on for Dr. S to tell me something positive. Called Dr. K in Fort Wash. and wont take me b/c w/c! Cried again. I like my pmdr. but i want expert with many years experience who specialize in RSD to give an opinion for tx. W/C denies payment- won't cover feet. Guess they really don't know RSD. Frustrated. Sad. Need help. I recently saw a list of Dr. in USA who are specialize in RSD(thought it was on RSD website) but cant find it. Anyone know? momof4
I'm so very sorry for what happened to you. We all cry with you and for you. Please don't give up. Pete's advice is good. I know he's got Dr. Knobler who sounds wonderful. I'm sure too Dr. S doesn't know. This insurance mess is awful. I found a wonderful Dr. -in year 6 with him. Paying $250 an hour once a month. But he is psychiatrist, neurologist and pharmacologist and has saved me from going down hill. A lot of good Dr.s won't take insurance..
You have a good lawyer don't you? I didn't pursure lawsuit-just no energy for that. It's been 15 years for me, and I can't work anymore, this whole thing has taken it's toll on our family financially and emotionally, but we are still closs and supportive and doing our best to work thru it. Looking for the good and grateful for life, even though 'life' is different. You are in my prayers. loretta with soft hugs
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Old 12-15-2009, 08:48 PM #7
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Default My doctor's name is....

Dr. Steven Rosen with Fox Chase Pain Management in Jenkintown, PA. He is the doctor that was able to get me the proper testing done to diagnose me with Brachial Plexopathy and Lumbar RSD --- when other doctors were calling it Fibromyalgia. He is extremely knowledgeable and hands-on. He did my surgery for my 2 Spinal Cord Stimulators and got me on good meds that I can't credit him enough on how he saved my life. Without him, I'd be in a wheelchair and atrophied away.
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Old 12-15-2009, 09:12 PM #8
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Quote:
Originally Posted by vannafeelbettr View Post
Sorry you are having such difficulty. I saw you mentioned wanting to see DR. S., which I know is in philadelphia and you also mentioned a doctor in Fort Washington, but I don't know if you are referring to FW, PA. If you are from this area, I have a great RSD doctor in Jenkintown to recommend.

Vanna
Hi. Yes Fort Wash, Pa. Who do you know in Jenkintown? Thanks. momof4
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Old 12-15-2009, 09:15 PM #9
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Vanna has given that info, one post ahead of yours...

Hope you got it!

Hope he takes your insurance!!

Pete
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Old 12-15-2009, 09:16 PM #10
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Quote:
Originally Posted by AintSoBad View Post
Yes,
Doctor Knobler is in Fort Washington PA.
True, he takes no insurance. And the first consult is expensive.
(I think you should speak with your WC lawyer)
The problem is, the insurance companies DO KNOW RSD!
They know it's a lifetime of problems.

But, what Dr S. office did to you, is unfathomable!
I'll bet, that Dr. S has No Knowledge of it!

Dr Schwartzman, and Dr Knobler were partners @ Jefferson for many years.

Vanna, let's hear that other name?

Thanks.

pete
I agree I am sure he has no idea. You were the one I read that saw both Drs. and suggested trying Dr. K if cant get in to Dr. S! It is expensive but i was willing to pay they just wont see me until w/c case is closed.
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