NeuroTalk Support Groups - Doctors for RSD/ CRPS in PA, NJ or DE?

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Doctors for RSD/ CRPS in PA, NJ or DE? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/9830-doctors-rsd-crps-pa-nj-de.html)

are their any doctors in upper michigan

I was told i have red/crps almost a year ago and still cant find a doctor i need help.....thanks betty

Quote:

Originally Posted by InHisHands (Post 54496)

Unfortunately, I am too young to be seen by Dr. S./ their group. :( :( :( That is who I had really wanted to see but we contacted their office and I am not able to see them there. :( I am not 18 yet, so that possibility is out for now. Maybe somewhere down the road I can see him, if I am still dealing with this.

Thank you for the replies.:Thanx:

Try Childrens Hospital in Philadelphia, they have docs who know about CRPS.
Lucky853

Thank you, Lisa.....I really appreciated what you typed....I'm sitting here in new surroundings as I've been moved by someone who says he's "helping me"...After having the diagnosis of RSD since Oct. 07...I've really tried to do all I thought I should do and all I've been "advised" to do.....And I'm still dealing with more pain than a mind should have to deal with.......I'm so frapping depressed.....I passed my wits end months ago.....I feel so alone I just can't say it enough.....I have not one "true" friend left, I fear....As those who say their helping me are only going through the motions, at times....I feel like such a burden and really don't want to live, if this is what my life is about.....I saw Dr. S. for the second time....A re-consultation they called it.... whisked through there like, omg what just happened.... And left with Dr. S saying to me, and I quote.....Just if you would, stay long enough to fill out the paperwork the front desk gave you and leave everything else to me, I'll handle it"....WTF.....Weeks later, here I sit and I have not a clue what's going on, if anything......Reading information about this thousand dollar unit like the TENS that you stick your feet on and regain Chi....ha...frapping bologna......Friggen workman's come....Life.....Just watching the world pass me by and not a soul to give a chit either way....Folks are too busy with their own lives to see desperation in one little grain of sand on this blue marbled beach.....I feel useless, worthless and down right not worth the powder to blow me to hell......No one to talk to and even if there was someone to talk to....it goes in one ear and out the other....No one hears.....The pain I have drives everyone away....They ask, how are you....and don't want to hear it......I'm still waiting for the bruise.....Nothing wrong with me and I'm incapacitated...And loose what's left of my mind on a weekly basis........Now that's going on, blowing wind.....I think to myself....If they did care, they'd be glad to help me or spend time with me....But, Naw....I'm only fooling myself....Cause here I sit...day after day after month after year, by myself...More so...Alone...helpless and useless and not worth the powder to blow me to hell....That's what looking for a Doctor that will help me to at least have a better quality of life, has done for me....And that's what this "whole body CRPS", pain has done to me....I'm not the me, my brain says I am....And I haven't been for quite some time.....Yeah, I know....I'm depressing....No chit....I'm depressed...More so, I mourn daily of the loss of my life as I knew it.......And that is killing me....I'm dying of a broken heart...The loss of me....My lifetime partner.

Quote:

Originally Posted by lisashea (Post 56032)

This is a very difficult question and I wish I knew the answer but I don't but I do have very strong opinions on this topic.

My opinion is that the doctor who takes your pain away is the best one but it sometimes takes visiting 5,10,20 doctors before you find the one who figures out "your" very specific issues.

The way I went about researching doctors was asking on forums like this and then researching on the internet and calling the office to see if they treated me like a human being. I wanted a doctor who had seen tons of patients with similar symptoms. Not just a few here and there amungst others. A real specialist.

Back in 2001, Dr. Daniel Carr was one of the "big RSD" doctors. He was teaching at Tufts in Boston and seeing patients a few days a week. I was unable to get an appointment scheduled with him for something like 6 months so me and another woman who had RSD, went to his office and cried to the secretary to get us in sooner. It worked and we both were seen on the same day so we could drive in together!

Once I became his patient, he gave it his all to try different things to help me. He truly cared about me and my pain. The problem was that he was treating my pain and not trying to figure out the CAUSE of it and ask whether or not it was fixable. He thought it was a classic case of RSD and I had all the symptoms. My left leg was 86 degrees and looked like crap. There was no way to not see that. He had seen this hundreds of thousands of times before and was an "EXPERT" on RSD so how could he be wrong?

I guess the lesson to be learned is that since he was so familiar with RSD that was what he was looking for. Each specialist sees the world thru their particular angle. What I really needed was someone to look at the big picture. See the forest, not the trees. My warning is that sometimes it's really not what they think it is.

Physiatrists are supposed to do this. Look at all the systems and figure it all out. Rehab doctors are supposed to find you recovery. That's what I searched for - complete recovery and I wasn't going to stop looking until I found it. Pain doctors only treat the pain not look for the cause or the cure.

In regards to particular doctors, for me, the doctor who saved my life is my chiropractor, Dr. Michael Miller, but Dr. Joan Borg-Stein was the 1st one to think I had entraped nerves that were fixable not RSD. Dr. Carr did everything he could to take away my pain but he didn't know how.

The other doctors I had seen for opinions I would not recommend to you. They are some of Boston's Best and I'd be glad to share names with you in private but don't want to bad-mouth anyone who may be helping someone else who reads this. Just because they didn't help me, doesn't mean they won't help you. We are all so different.

I had spoken the Dr. Schwartzman's office when the Ketamine coma's first came out and tried to get Dr. Carr to do it to me here in Boston. However, I did use a Ketamine compounding cream and Dr. Schwartzman spoke to Dr. Carr about how to use it with me. They are collegues and all the RSD doctors know eachother.

That's another problem, all the docs know eachother so they won't disagree with their buddies. It's the old boy network.

Sorry about being so long winded. I guess I have alot to say on this subject since it took me so long and so many doctors giving the wrong advise and treatment and I don't want you to go thru that.

Peace and hope,
Lisa

RSD Doc's in Mich.

I wish I had the answer for you, Betty.....I live in PA and have seen doc's that know about it and I'm still waiting.....I don't want you to have false hope and i don't want you to feel alone....But the fact is, having RSD/CRPS is like waking up from a coma in a foreign country....RSD / CRPS defies all Medical logic and Medical testings....Showing nothing's wrong....You'll run into professionals that will tell you it's all in your head...They'll tell you that you need to be more positive....They'll tell you that you need to try harder and the truth is, they don't know what their talking about...It is not all in your head....Fact is, your nerves are in overdrive, lying to your brain....But those that think they know it all will tell you so much crap that will leave you wondering if you're nuts....And you'll feel nuts...Trust me on that one....I'm flat bonkers....I'm just really careful who I say that to and who I say that around......Because I'm dealing with workman's comp and if they can say I'm just flat nuts they will....Which scares the beegeebers out of me....They even tried to prove in "their" court of law that I am depressed because I lost a child back in 1981....Not because I have severe pain that they can't comprehend......I want you to know you're not bonkers....You'll just feel like it....I want you to know your brain is a liar to you....I want you to know RSD / CRPS is very real....I want you to know, to avoid stress at all costs....I want you to prepare for when the barometer is in any range under 30....I want you to know some of the pain creeping up on you is a limb going cold and to put a heating pad on that area.....I want you to know, don't push things physically because you feel good today....Cause RSD / CRPS will get you back within 24 hours, with a vengeance....I want you to know that gravity is the enemy that facilitates RSD / CRPS pain....I want you to know that when one is in water, up to their throat...The water takes off 75% of body weight and will help to diminish pain temporarily.....I want you to know that if you have something you're planning on doing Friday.....Rest Wednesday and Thursday so that you may enjoy Friday....I want you to know that life as you know it is different now and friends may not come around much, as time goes on....They can't understand pain....They only think they know pain...But they don't....I would rather have a c-section once a year, without anesthesia for the rest of my life than have RSD / CRPS pain....They'll (friends and family) do the best they think they can, for awhile....But they'll feel bad that they can't take the pain you experience away or they'll get tired of helping out....And become, once again, selfish....And think they don't have time....It won't be anything you've done....Cause I know you're doing the best you can....I can tell you, I'll still be around....Because I understand the pain you deal with....I understand how hard life has become....I understand how tiring it is to hurt all the time...And I'll understand the depression you experience is from living in constant pain....And I won't take 2 years to come back to this site again....As being able to see there are other's out there that are in similar shoes I wear, quite possibly might help me more than I know....I regret anyone has to deal with RSD / CRPS....If you happen to find a Doc that is humble enough to admit he / she doesn't know much about RSD / CRPS, but is willing to learn about it and see you at the same time.....I believe that would be a good thing....It might be frustrating on occasion, but it's a whole hell of a lot better than nothing....I wish there were more I could do...But I also am still in search of a Doctor that factually can and will help, with regards to RSD / CRPS...Not that I don't have a few now...It's just that only so much has been done that factually does help..I believe we never stop looking until there is no more pain....I'm also in search of a friend or friends.....Many soft hugs ~!~

Quote:

Originally Posted by nkklynn19 (Post 837912)

I was told i have red/crps almost a year ago and still cant find a doctor i need help.....thanks betty

Hey fireball,
I am in pa and am looking for a dr whose worked with rsd, im in the same boat as you are.with comp if you can personal message me with a suggestion id truely appreciate it! Also im sorry to hear what you are going through! At least we all have each other to turn to someone who actually understands! Best of luck and hope to hear from you soon!

I don't know how to message you....Frankly, I'm doing well to be able to find my way back to the site and way really surprised to get your message.....I have facebook and yahoo....But a bit hesitant to put my info out here...Thanks for the surprise....

Quote:

Originally Posted by justwantanswers (Post 840265)

I'm searching to figure it out though.

Quote:

Originally Posted by Fireball (Post 840554)

well i got your message but it says i do not have permission to send private messages, i could email you if you wanted to send me your email, but i see your concerns and completely understand. I will try to figure out how to reply in the meantime

I've been treating in NE Philly, and due to a new injury, and loss of my old doctor, I've been treating with some new ones. An internets is my favorite, and I'm surprised, that they ALL are familiar with RSD! As compared to '83, when I contracted it.

First, my suggestion is find a good internist who is familiar, and go from there, it will take time. But the one I found, was willing to take me on, on a trial basis complete pain management. So, just take the leap of faith! The first step, is the toughest!
Wish ya'll well!

Pete

asb

There are doctors in Newark, DE and they have an office in Elkton MD doing ketamine. It is the mid Atlantic spine and pain physicians.