Rsd
 

I have rsd for 12 years. It started in my left arm,shoulder and neck .over the years it's been messing with my right side .ive had injection done and the spinal stimulator .nothing seems to help the pain.in October I
Seen I had a sore on my left leg.i thought I was bitten by somethings .then I seen another was on my right leg . Before that could heal another one appeared on my left leg.i when to the er and was told they could be coming from rsd .i have been working with pain Management .i told him when my legs started bothering me and he told me it couldn't spread.over time I learned it can. If anyone knows of a good doctor in New York area can you please give me the nm er I'm in Brooklyn. New York . I would give anything to have 5 mins without pain.ny body hurts just to have clothes on.i really need some help..please please help me

hi katurah. i'm so sorry you are suffering so much with rsd. rsd can spread to any part of the body and also internally affecting our organs. unfortunately there are still drs out there that don't educate themselves enough on rsd and don't know that it can spread. if i were you i would try to find a dr who knows what rsd is and how to treat it and see them. a good pm dr can hopefully help manage your pain. there are good drs out there and i'm sure you will find some good advice from people on this forum as well as searching the internet. i don't live in ny so i cannot recommend anyone there. i hope you find a good pm dr soon who can help you manage your pain and stop the spread of your rsd. soft hugs coming your way.

Hi katurah1975, Welcome to this forum, but I am sorry that you have had to deal with this for the past 12 years. As you have read, yes RSD can spread at any time. It sounds to me that your current pain management specialist is not entirely informed about CRPS/RSD and I am glad to hear that you are taking the steps to find yourself a new pain management specialist. I do not live in NY so I can not recommend a doctor to you. If you do not receive a response from anyone that does know a good specialist, I do have a list of doctors in all 50 states that have been known to provide care to patients dealing with CRPS/RSD that I would be willing to share with you.

Wishing you the best in your search for the relief we all deserve. Sending warm healing hugs:hug: out to you,

Hi Katurah,

Welcome to the forum. It is definitely a great place for sharing and support. Here is a link to the RSDSA site's All states Doctor List. There are lot of NY docs. Their list is compiled from practitioners who have contacted RSDSA to say they have an interest in treating CRPS patients.

http://www.thblack.com/links/RSD/All...ctors-list.pdf

Here is a clinic that gives ketamine infusions if that is something you would like to pursue. I read a research article recently that showed outcomes were actually better in chronic CRPS than acute...
http://nyketamine.com/

Some places don't list ketamine as a service. I found my doc by cold calling clinics to see who provided this service.

I don't know if you have considered low dose natrexone. Not a lot of doctors seem to give it but it is currently under study at Stanford for CRPS and seems to address skin/circulatory issues from the studies I have seen.

As you know, keep at it to find a doctor you want a long term relationship with. I never went back for a second visit with the first two I saw. Third time was a keeper.

I hope you find relief soon!
Sending gentle hugs and healing love, :hug:

Hi Katurah,

I am sorry to hear about your condition. I've only had CRPS as a teenager for two years so I can't imagine what you've been going through for 12. Luckily, I live in New York too and know of a couple places/hospitals I've tried and continue to try. Please call 212-659-8551 to reach the internal medicine associates at Mount Sinai, located at 17 East 102nd Street and also visit their website by googling "mount sinai internal medicine" then clicking the first link. For some strange reason I'm not able to share websites or images because I only have 8 posts.
There are many different services offered here and while treatment options may seem broad now, I'm confident that the great people there will connect you to the right doctors and ones that actually know of our suffering. Schedule an appointment as soon as possible (insurance shouldn't be an issue) and let me know how it goes. I just came back from my second lumbar block today so I'll be around. It's going to be a long road but we'll travel it together. I sincerely hope I was able to help in any way! NYM