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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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04-11-2011, 03:34 PM | #1 | ||
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I'm so glad I was apple to help. I would be lying if I said I don't take any pain meds. but I have come from 35 pills a day in 2003-2007 to almost nothing. I have done ketamine 3 - 5 day inpatient infustions which did help tremendously. But I had to do 3, which was a drag, believe me. As I think I mentioned I have been with the same group of doctors for 7-8 years and I was always preached to "once all this is over you will be getting off the medication" and I did. My doctor would always tell me to much of pain killers will actually make you worse in the long run you really have to keep it in check. So, please don't say "I'll cancel my health insurance and buy from someone else", thats really not a solution.. Remember I have a 20 yr. old college student and he tells me everything, sometimes I don't even want to know. But we where all 20 at one point so I get it. I actually have never seen the size of the needle, I'm a big baby. What part of NY do you live? Are you close to Manhattan? I hope you appt. goes well today . Keep us posted. Gabbycakes |
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04-11-2011, 07:00 PM | #2 | ||
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Basically long story short I sat in a hot waiting room for way too long, got funneled in like a dog being put down, then accused to dr. shopping even though I have had a prescription to anti-anxiety meds for 2+ years now, and they help tremendously with my anger and anxiety (often related, and when I say anger I don't mean swearing I mean breaking thousands of dollars worth of **** and beating the **** out of people that cross me). He then goes on to say that if the first block didn't take, that I shouldn't have another, something I thought all along but everyone else including his own employees said I should stick with. And then, he says in order to get another script of percocet (pretty much the only thing keeping me from the street right now), and a consult with him tomorrow, I have to submit to a drug test. So whatever, I already wrote cannabis on my check in paper, so I **** in this cup just so I can meet with him tomorrow to tell him how much of a f*****g c***s*ck** he is. He said all of this in a very domineering tone as if I'm not a man. And yes, my mom was there, but I wish she wasn't I woulda stabbed that *** **** with his own horse needle. And sorry for my language edits but that's the only way I can convey my emotion here And I live in Albany. Last edited by RSD_Dan; 04-11-2011 at 07:02 PM. Reason: bein ticked & where I live |
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04-12-2011, 05:27 AM | #3 | ||
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Sorry to here you felt treated so badly. PM is a funny business it can be a great help and or it can make you worse. You want someone who is going to watch out for you in regards to medications. To me thats a smart doctor anyone can write a script. So my advice to you is to take it down a notch and try and work with this doctor if you and your Mom think he's good and can help you. There's not a respected PM Doctor who will work with anyone who is arrogent and nasty. They are to affraid of losing there license. Unfortunitly, many abuse there medication, use it recreationally try and get in sooner, thats not what PM is. You stated you where an athlete, if I where you before you go to your appt. today move your body if you can even if you walk 25 feet in front of your house/apt. and try and relaxe. As an athlete you know how good your body can feel when it moves. Exercise for me is something I have to do everyday to beat this beast. I go to gym 3 times a week and walk the others I can't do everything but if I didn't do it I would be misreable. I could not do all this when I was going through 7 surgeries, 3 ketamine procedures etc. when I first had my accident. My problem in upper extremety so it's easier but I do have a slight spread of RSD to my back like I stated in my first post. I told you before I have a 20 yr old son he was also a althete from 7-18, played ice hockey. We traveled around the Albany area all the way to Lake Placid. He hasn't picked up his stick but for 1 time since his last varsity game he just had had it. But the point is he feels the effect on his body from not working out all the time, being on the ice 7 days a week blah, blah. The point is excercise helps RSD. When you get time today look up Dr. Sherry in Philadelphia. He is a pediatric RSD Spec. He has a very interesting take on RSD and how to cure it,especially for young people up to 18. I believe the University of Chicago is working on a simular treatment for adults. Just read it. I see alot of my son's friends who I have heard display behavior such as you described in your post.Again my son's know angel but never displayed that kind of behavior. Its tough for young adults today I definitly get it but there's no excusse for that kind of behavior. First it increases your stress which will flare any kind of medical condition not just RSD. So like I said before take it down a notch, try and get some kind of body movement so you feel a little better before you see this doctor today. If he is willing to work with you,you need to show him you are responsible. Dan, good luck today. You need someone to work with you so you have to work with them. KEEP US POSTED. Gabbycakes Last edited by gabbycakes; 04-12-2011 at 05:28 AM. Reason: Spelling |
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"Thanks for this!" says: | ballerina (04-12-2011) |
04-12-2011, 07:24 AM | #4 | ||
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Don't know where you are in NY so I am posting what I found:
New York: Durkin 631-638-0800 Waldman 212-606-1015 Haider www.killpain.com Hertz 212-523-6357 Northshore Hosp 516-496-6506 New Jersey Getson (worked with Dr S and has great rep) Zampella 973-285-7800 Camden (no doc name) 856-983-7246 As a word of warning.....prob not a good idea to mention your previous use of ketamine!!! They probably will not want to take you on. The K infusions are a little diff anyway. If you do the outpatient they will give you a three hour infusion mixed with Versed and prob Ativan. In patient is 5 straight days. I know a doc that is not on there that does in patient. Richman in NYC. Good luck to you...I hope you consider trying it. Liz |
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04-12-2011, 09:00 AM | #5 | ||
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Richman is with Waldman at the Hospital for Special Surgery. The Camden, NJ number above is actually the number for Getson in Marlton, NJ He used to also be at Cooper Hospital, which is in Camden. Last edited by SandyRI; 04-12-2011 at 09:54 AM. |
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04-12-2011, 09:43 AM | #6 | |||
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Dan,
We all get very frustrated when doctor's "don't act like we want them to". Be mindful that they deal with all walks of life daily and need to protect their license to practice medicine. My doctor's always tell me they wish they had more patients like me who are afraid of and wont take narcotic medications. My sister was labeled in all local hospitals as a "drug seeker", so they know her game....me complete opposite, maybe seeing my family struggle with addiction has steered me the other way, not sure. But any how, if you truly feel there is going to be a problem with this doctor, try and find another one first. It is hard to find doctor's to treat this beast and throwing F*** bombs around will not make it any easier. I currently treat with a PM Dr. who is very rude however, I am trying to overlook it and get some relief. Could I switch? Sure, but saying she was rude probably won't get me far with a new Dr. They stick together and usually won't go against another Dr., so think of that for future medical treatment needed. We can all get pissy and hot headed, but remember, we are only hurting ourselves, causing flare ups and causing our doctor's to be extra guarded when treating us. If you have a legitimate, medical complaint that is another story, by all means run and run fast. Hang in there, we are here for each other!!!
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Live, Laugh, Love~ . |
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04-12-2011, 11:51 AM | #7 | ||
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My daughter is in Syracuse. I think you will see ketamine there before you know it. Also...this is only ONE list. There are plenty of other doctors who do it.....you just have to search. I would join a bunch of the RSD groups on FB if you want to learn more.
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"Thanks for this!" says: | SandyRI (04-12-2011) |
04-12-2011, 08:57 AM | #8 | ||
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Gabby is right on. My message wasn't strong enough...try to behave yourself!! Sorry to sound like such a Mom, but we all care about each other here and don't want to see you get blacklisted by all the docs in your area. I also have the latest list of ketamine docs from the RSDSA (the info that Betsy gave you) - from what I can see they are all in and around NYC and Long Island. There are a few in New Jerrsey. I don't see any in northern NY. But the treatment is worth traveling for, I went over 300 miles from RI to Marlton, NJ to Dr. Getson for my first 22 low dose ketamine infusions almost a year ago now, it has changed my life!! I returned to my full time job after a year's sick leave from my RSD. Please take care, Sandy |
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"Thanks for this!" says: | gabbycakes (04-12-2011) |
04-12-2011, 01:24 PM | #9 | ||
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The appointment was ok, although at the beginning I told him I would be going back to my original neurologist and (Dr. Argoff) who referred me in the first place. I also told him I was displeased with his attitude and treatment towards myself, a patient and his customer. He responded by saying he wanted to make sure I was not drug seeking, and then went on to say that he would like to still try and work with me in some manner. He then went on to say that he would not prescribe me any narcotics or muscle relaxers as I had tested positive for THC (no **** sherlock, I had stated that I am an occasional user of cannabis from time to time on your little sheets and before you even gave me the **** test, so what was the point?). Not that I want to be on these things forever but they help a little for now. He did give me a script for pool physical therapy which I asked for and know I need. At least I have an appointment with Dr. Argoff and he has enough time now for me to be a regular patient, and he also is a friend of my mothers and her boyfriend (who works in oncology at the same hospital, Albany Medical Center). This guy is also a lot more reasonable and friendly, and doesn't wear oakley reading glasses and $7,000 suits to work like that other @$$. Thank you all for your help and support it has been a real life saver, I wish I could comment on all your posts and reciprocate a little more right now but I have to go, thanks again. -Dan |
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"Thanks for this!" says: | gabbycakes (04-12-2011) |
04-12-2011, 05:54 PM | #10 | ||
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Sounds like you accomplished a lot. Hope all continues well and keep us posted. Gabbycakes |
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