I emailed the CRPS Institute in Manhattan and hope they will see me. I don't know if they accept people who have had rsd for over three years, but I figure it's worth a try. I don't feel like my drs are trying to help me get better. They are just going through the motions and I want to get better. I'll keep you filled in in case you're interested. I live in NJ so it's not too far a drive and my husband can drive me. My immune system is crumbling and I read on the CRPS Inst of Manhattan site that they may see a link between rsd and another autoimmune disorder and something they are using to help treat it. Anyway, I hope they can help. Have a good night.

I hope they do accept you and it helps.

That is funny that you brought that up today ... when I was 10 or so I was diagnosed with jr.rhumitiod arthritis an autoimmune disorder. I have seen the papers I did have it, by 16 it went away mysteriously no clue why. Why I was amused was because my new doctor called today to ask me about it! I guess she missed the part in my records where I was retested after the accident it was one of the very first things we ruled out .

I wish something was closer to me for an rsd specialist the closest is San Diego I think around 6 hour drive for me.

I'm glad you've tried to get in there Renee, hopefully they have a larger repository of wisdom than your current docs and can actually help a bit more.

There is a growing number of scientists convinced that CRPS has some kind of immuno-system malfunction going on. Why do some people recover quickly after initial onset, and others have it set in for life? There must be a reason. This thinking is the reason for the IVig trials (intra-venous immuno-globulin), and others, to try to boost the immune system in an effort to have your body actually start to heal itself. It's still theoretical for the most part, but that's why the trials are being done.

Good luck - I hope you get a speedy and positive response! If I were near the place, I'd be trying for it too...

Let us know how you get on.

Bram.

Ah let me know how it gos Renee. Ive thought about calling them and seeing how long there waiting list is to get on. But I see Shwartzmans team in PA this June, so im going to that apt and if im not satisfied then Ill either call that Dr in DC that does treatment (and you can get in quicker with her) or ill call this place in NY. All 3 of these locations are right around 1-2hrs from me, so it doesn't hurt to even see all 3 of them if that's what it takes to get this beast under control.

Thanks Nanc, Bram, LLynnia and Tos for your caring thoughts.
Nanc, Thanks for reading my post and always being such a good friend. You are always so kind and caring.
Llynnia, I was tested for rhuematoid arthritis because it runs in my family, but was told I don't have it. I have fibromyalgia, but that's not considered an auto-immune disorder. I don't think I have any other auto-immune disorder beside rsd. I think rsd is an auto-immune disorder because it is ruining my immune system. I glad that you don't have rheumatoid either.
Bram, You are so darn smart. You should be a doctor, seriously. You knew exactly what I was trying to say about the immune system and IVig trials. That's what this institute in Manhattan is exploring. If they let me, I will consider being a part of this trial. Thank you for explaining to me and everyone what this institute is trying to research. I'm not very good with words and not as smart as you. I really appreciate you explaining what I was trying to say.
And Tos, I hope that your visit to PA will be a good one. I hope they can help you. If you would let me know how it goes, maybe I'll check them out too. PA and DC aren't that far from me either. I first thought the Manhattan clinic would be too far, but at this point two hours is worth it if they can help make me feel better.
I will let you all know how it goes. So far, I have not heard back from them yet. I hope I hear from them and soon. Thanks again for your caring and support. I wish you all a pain free and peaceful night.

Hey Renee - I'm very interested to hear their response. Yes, please keep us posted. BTW, maybe I missed it, but do you have type I or II?

You all on the East Coast have so many more options for treatment and trials. That is awesome! Again, best of luck and keep us posted!

Hi Vrae. I will keep you posted. I was hoping they would have emailed me today, but maybe tomorrow they will. I'm not very good with patience, but am trying to do the best I can. I will let you know how it goes. I was told by my pm dr that I had CRPS Type I. But I didn't see anything online about this Manhattan Institute specifying Type I or Type II. I got the impression from what I read that they would take either if they think the person with rsd is a good candidate. I don't know though what that entails. I'll let you know as soon as I find out. I'm keeping my fingers crossed that maybe they can help us all someday. I hope you are doing okay and wish you all a good night.

oh no no, I was just curious about type. I'm sure they take both as they are so similar. Was it surgery that lead to it or something else?

I called and was told they do not accept my insurance; fees would all be applied to my out of network benefits and the estimated cost for an initial visit was more than $1,000. Most importantly, I'm not sure this place is legit. It appears to be an umbrella organization for a spine center!! That's what I discovered at least. The doctors themselves may be good, but how much do they really know CRPS.
You will be MUCH better off finding a quality pain management specialist at a major hospital like HSS and St. Lukes Roosevelt where they have a dedicated team treating CRPS patients and follow/offer CRPS treatments.

Sweet name