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Old 12-15-2008, 07:44 AM
 
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I was diagnosed with RSD (Reflex Sympathetic Dystrophy) recently.It started out with a broken toe which resulted in RSD.I went through steroid injections to the foot,Physical Therapy(which made my condition worse),several Dr's,Pain Management Specialist & a Neurologist who did an EMG on both legs which in turn gave me more pain since.I've been on Percocet, Vicodin. Lidocaine Patches,Cymbalta, Oral Steroids, Lyrica..& several other drugs...Vicodin seems to be the only one that helps to some extent.If anyone knows of any doctors within NJ that are truly knowledgable in RSD,I'd greatly appreciate any information.The doctors I've seen to date all seem to say the same thing 'You're young, it'll get better in no time'..I've been hearing this for 6 months now & I'm 37, healthy & fit.I feel they see me as a healthy person & don't understand it has nothing to do with that but rather the nervous system-very frustrating to say the least.It leads me to believe they're not that knowledgeable & Im going to all the wrong Dr's.I was even referred to a Dr who's supposedly an RSD specialist & there were great reviews about him online..well..he told me that I was young & I'd be back at work in no time & ..Hmm.When I ask questions about RSD or tell Dr's that I've researched it in depth, I get referrals elsewhere or told that my condition is unexplainable.There has to be a doctor in NJ that understands this condition? People around me seem to not understand the pain I go through & that it fluctuates from day to day, I have good days then I have some pretty bad days..Help...Anyone out there that knows of a good doctor..please share information..
Thanks
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Old 12-15-2008, 09:19 PM
b75
 
950 posts, read 3,353,656 times
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I am going through something similar. I'd like to find a neurologist to diagnose me definitively. I can tell you there is an anesthesiologist at St. Joseph's who seems to specialize in RSD; his name is Dr. Uminoff (website Paterson, NJ Pain Management, Anesthesiologist - Dr. Michael D Umanoff MD - Spine Treatment) I haven't been too him, but the site also mentions an RSD Support group which might be helpful. I'm still at the point where I am trying to find a neurologist for a diagnosis. Could I ask what the name of the neurologist was that you received your diagnosis from? Was he/she specialized in CRPS/RSD?

Good luck to you - having researched this I know full well how bad you may be feeling
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Old 12-16-2008, 04:45 AM
 
Location: NJ
21,473 posts, read 29,135,583 times
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Quote:
Originally Posted by loislane711 View Post
I was diagnosed with RSD (Reflex Sympathetic Dystrophy) recently.It started out with a broken toe which resulted in RSD.I went through steroid injections to the foot,Physical Therapy(which made my condition worse),several Dr's,Pain Management Specialist & a Neurologist who did an EMG on both legs which in turn gave me more pain since.I've been on Percocet, Vicodin. Lidocaine Patches,Cymbalta, Oral Steroids, Lyrica..& several other drugs...Vicodin seems to be the only one that helps to some extent.If anyone knows of any doctors within NJ that are truly knowledgable in RSD,I'd greatly appreciate any information.The doctors I've seen to date all seem to say the same thing 'You're young, it'll get better in no time'..I've been hearing this for 6 months now & I'm 37, healthy & fit.I feel they see me as a healthy person & don't understand it has nothing to do with that but rather the nervous system-very frustrating to say the least.It leads me to believe they're not that knowledgeable & Im going to all the wrong Dr's.I was even referred to a Dr who's supposedly an RSD specialist & there were great reviews about him online..well..he told me that I was young & I'd be back at work in no time & ..Hmm.When I ask questions about RSD or tell Dr's that I've researched it in depth, I get referrals elsewhere or told that my condition is unexplainable.There has to be a doctor in NJ that understands this condition? People around me seem to not understand the pain I go through & that it fluctuates from day to day, I have good days then I have some pretty bad days..Help...Anyone out there that knows of a good doctor..please share information..
Thanks
Hard to recommend someone when NJ is a pretty large state.
I'm in South Jersey, my Dr, Kenneth Rogers does see patients for RSD link

He's my favorite Dr, great bedside manor.
He doesn't see anyone without a referral, that I'm pretty sure of.

btw, I know chronic pain. I know excruciating chronic pain. No one should suffer like this.
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Old 12-16-2008, 12:21 PM
 
8 posts, read 53,688 times
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Yes I do agree that NJ is a large state, however I'm willing to travel a fair distance for a good doctor, especially if he/she can help me with the pain.As for the neurologist I went to..His name is Dr S.C Fan, his office is out of Red Bank..DO NOT go to him, terrible bedside manner, we had a language barrier & I could barely understand him, not that that's a major issue but in some ways it is when you are trying to explain symptoms & he isn't understanding.He even tried telling me that it wasn't due to a broken toe that the RSD occurred, but that my right foot was painful as well??? I told him I knew my body & my right foot was fine & moving..He said I had no idea?? I was appalled to say the least & never went back. He doesn't like being asked questions & didn't like the fact I had a lot of questions & had done research. He was quite rude.He didn't diagnose me, instead he did an EMG which apparently isn't meant to be done on RSD patients..he caused me more pain & I believe he hit the nerve incorrectly when inserting the needles, so I was left with more excruciating pain & the EMG was done in September. The day after the EMG, I started getting shooting pains on my upper left foot where the needle had been inserted, I had even told him or should I say yelled during the EMG that when he inserted the needle in that area, that it was unbearable & the pain scale 1-10 went out the window. When I asked him what his final determination was..he said "Your condition is unexplainable", he then told me to pump myself with enough Vicodin & try Physical Therapy again even after I told him it made my condition worse.He basically had no advice/referrals..anything to offer in my eyes, he isn't a very good doctor.There are 2 types of Dr's in my eyes, the ones that truly care & love what they do & try to help even when they are faced with a situation that doesn't give them textbook answers, then there are the Dr's that once it's not textbook, they give up as I believe they really dont like what they do-Dr Fan is the latter. I did go to Dr Metzger (Pain Management Specialist) in Shrewsbury, nice man, he suggested a Sympathetic Lumbar Block which I disagreed to so on my next appointment I want to discuss Physical Therapists that specialize in RSD or other alternatives -I just found out recently that there are P.T's that specialize in RSD. I had gone to a regular P.T who didn't understand the disease. Thankyou both for giving me the names of those doctors, I will be looking them up. I appreciate it. B75-as for getting a diagnosis, it may take a few doctors visits before you get a diagnosis as they try to rule out everything else via EMG, blood tests etc..I wouldnt recommend the EMG as after doing research I found every site to say that needle insertion wasn't recommended for RSD patients..Dr Metzger does specialize in RSD & he has a few offices, i know of the ones in Shrewsbury & Manalapin. I will keep you informed on the progress, as to whether I get any referrals for other treatments or if I find someone that is knowledgeable in this area.. Thank you both..
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Old 12-16-2008, 12:24 PM
 
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Oh B75 I forgot to mention..I received my diagnosis from Dr James Day & Dr Metzger..Dr Day is an Orthopedist who was my original treating physician when I broke my toe. He in turn gave me all the referrals as he had suspected RSD from the start.
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Old 12-16-2008, 03:46 PM
 
Location: NJ
21,473 posts, read 29,135,583 times
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Quote:
Originally Posted by loislane711 View Post
His name is Dr S.C Fan, his office is out of Red Bank..

he did an EMG which apparently isn't meant to be done on RSD patients..he caused me more pain & I believe he hit the nerve incorrectly when inserting the needles, so I was left with more excruciating pain & the EMG was done in September. The day after the EMG, I started getting shooting pains on my upper left foot where the needle had been inserted, I had even told him or should I say yelled during the EMG that when he inserted the needle in that area, that it was unbearable & the pain scale 1-10 went out the window.
I appreciate you posting his name, very important that people like us know who not to go to. I had stuff done at Virtua Hospital in Mt Holly, and would never go there again for something like this (back/nerve pain).

Interesting about the EMG. I had one done within the last 2 years, my body gave weird readings from what I remember. The neuro had to check to make sure the machine worked right. I do remember it being very painful, more so then the last one I had before my back problems.

I haven't been diagnosed with it but don't doubt I do have it.

Quote:
Originally Posted by loislane711 View Post
There are 2 types of Dr's in my eyes, the ones that truly care & love what they do & try to help even when they are faced with a situation that doesn't give them textbook answers, then there are the Dr's that once it's not textbook, they give up as I believe they really dont like what they do-Dr Fan is the latter. I did go to Dr Metzger (Pain Management Specialist) in Shrewsbury, nice man, he suggested a Sympathetic Lumbar Block which I disagreed to so on my next appointment I want to discuss Physical Therapists that specialize in RSD or other alternatives -I just found out recently that there are P.T's that specialize in RSD. I had gone to a regular P.T who didn't understand the disease. Thankyou both for giving me the names of those doctors, I will be looking them up. I appreciate it..
I just looked up Sympathetic Lumbar Block, will print it out to speak to my Dr next time I see him. My way of thinking has been I'll try anything once, injections don't really bother me and I will play their game. Most insurance companies want certain things tried 1st, injections are usually one of them. I've tried Neurontin and after taking that will never try Lyrica. From what people tell me, side effects are the same.

I don't know how you feel about acupuncture but I went to a lady in Philly that was very good. Let me know if you'd like her name.

As for Dr Rogers, as I said, great Dr, very skilled with needles if you need something done. He doesn't make mistakes with hitting things. I've been trying to decide what I'm doing next.
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Old 12-16-2008, 04:37 PM
 
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No worries..Yes I do believe that when a Dr isn't good at what he does, it should be known so that others don't suffer.I wouldn't wish my worst enemy to go through the pain I've gone through.The reason I disagreed to the Sympathetic Lumbar Block,was due to the fact that I had a bad gut feeling.Yes it sounds strange I know,but I tend to go with my gut feeling on things.I had a bad feeling about the steroid injections but did them anyway & the outcome wasn't good,same with the EMG.All because of hope.After the EMG I think I can handle a needle to the eye-needles just don't scare me anymore But what the Dr's did say is for some reason my body has a bizzarre reaction to needles/injections.I've since found out that my dad had similar injection reactions when undergoing bypass surgery & my sister also said her body has reacted strangely to needles/injections..Hmm I did initially ask about acupuncture & was very interested,but after some of the reactions I've had (severe pain in any injection site which doesn't go away) my doctors warned me against it.I'm looking into alternative healing right now & the RSD specialist physical therapy.I still may try acupuncture, but am still researching it.I agree with you that I will try anything once..but.I'm also a google queen,so I research my little heart away & try & make an informed decision.As for the Sympathetic Lumbar Block,majority of sites say they can help with the pain but there's no cure at the end of the day.Also that sometimes it takes over 10 blocks to reduce pain or restore mobility.Also it states on a few sites that if you've had RSD for over 6 months,the chances of a successful Sympathetic Block would be slightly lower.Also the side effects are too risky for me.Even though they say they're minimal,I can't help but worry.The EMG side effects were approx 13% that they could hit the nerve incorrectly & guess what?I fell in that 13%.More permanent damage than what I started out with.I'm losing faith in the medical field slowly so I'm trying alternative medicine.My sister goes to an alternative healer back home (which is not the US) but he's world renown & she's asking him to refer me to one of his collegues in NY/tristate area-if it is at all possible..Will let you know if I get any good information. Thank you so much for sharing information & your experience,I don't know anyone with this disease & it's hard to explain when there are days I feel absolutely normal & days I feel like a crazy person walking around popping pain killers as if they were tic tacs-This isn't who I used to be...so I stay positive by researching RSD & options.After all,RSD changes ones life,but it doesn't mean it has to change you.One just has to learn that they will live their life with pain & limitations at times..Every day we are alive is special, so this is just another challenge that will, if anything determine me more..
By the way, EMG's are listed as 'uncomfortable', 'slight pain when needles are inserted' on several websites...well if you are finally diagnosed with RSD, that would explain the extreme pain you experieced.I'm sure you listen to your body just as I do. Regards
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Old 12-16-2008, 04:44 PM
 
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And yes Lyrica..bad bad...too many side effects...Dr's prescribe these drugs & tell you of possible side effects, that they can counteract the side effects if experienced, with other drugs & it becomes a vicious circle...sad but true..I only take Vicodin now..to mellow out the pain..I refuse to take anything else after the drug cocktail they had me on..
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Old 12-16-2008, 05:27 PM
 
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Default Rsd

A very close friend of mine has RSD extremely badly. She got the disease at 17. She seems to have it worse than you do. She literally has her life on hold from the monster. I know she sees Dr. Schwartzman in Philadelphia and he is the only doctor that is really good (literally, she's seen all of them in NJ). I don't have Schwartzman's information but I can get it for you. Email me privately if you need it. If not, you can google Dr. Schwartzman. Good luck!!
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Old 12-16-2008, 05:35 PM
 
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I was referred to Dr Schwartzman back in September but the earliest appointment they had was October 2009 or March 2010..I did hear great things about him & i know he is on the board for RSD...very renown & accomplished man i hear.i read great things about him & was so anxious to see him, when i was told that there werent any appointments in the near future Maybe I'll keep calling til they have a cancellation. I can understand your friend having her life on hold from it as I havent worked since this started...thank you for replying...
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