NeuroTalk Support Groups - New to Site. Need RSD help.

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- - New to Site. Need RSD help. (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/133882-site-rsd-help.html)

Quote:

Originally Posted by Deidre (Post 699707)

Wow! You guys are amazing! I can't believe I've waited so long to join a forum. Thank you all so much for your warm welcome and advice. I promise to check it all out! I've peeked at some forums since I've been diagnosed, but was usually scared away by people's horror stories. As I've mentioned, I am right on the edge of accepting my RSD diagnosis.
I am happy to report that I participated in my first yoga class tonight with one of my girlfriends! I was able to do everything! I had to use a towel under my knees for some of the positions and medicated myself before class. I also had to take a short time out at one point. I arrived at the class a few minutes early to introduce myself to the instructor. I wanted to let her know that I have a chronic pain condition that affects my arms and legs. I just wanted to make sure I wouldn't be "called out" if I couldn't do something or had to stop. I have never done yoga before and didn't know what to expect. To look at me you would never know that I was sick. I was probably the most physically fit person in the class, besides the instructor. Boy, yoga really makes you sweat! I was dripping, but that also seems to be part of RSD. I have a hard time tolerating very hot weather and winter is the absolute worst! I live in NJ, but feel that I should probably become a "California Girl!" Warm, low humidity days, cool nights and beaches. The beach has always been my "happy place."
Thank you all again and I'll check in again soon!:hug:

Hi Diedre, Welcome, although sorry for the reason you are here. I, like yourself, am so grateful for the compassion and support here. It's amazing the accumulated knowledge and helpful informaion we receive here and can also share.
I've been seeing a NY Dr. for the past 6 years, he moved to Scottsdale from NY and is very knowledable. He attended school At Cornell, Mt Sinai, and Pittsburg. He is a neurologist, internist, pharmacologist, psychiatrist, and now board certified with the anti-aging medicine and has two HBOT, which has helped some RSD patients. Yesterday we talked about ketamine and he has been researching it and is very pro-active in supporting it. He teaches, does trial studies for pharmaceutical companies and into research and reading of trial studies.
Diedre, I apologize, I started my letter to you, too late in the evening, so will need to finish tomorrow. Hope you have a restful evening. Take care with soft hugs, loretta:grouphug:

Quote:

Originally Posted by Deidre (Post 699480)

My neurologist wants me to see an RSD specialist in NYC, as my appointment with Dr. Robert Schwatzman is not until November of 2011. He has recommended either Dr. Richman from The Hospital of Special Surgeries or Dr. Ronny Hertz from St. Lukes. I am leaning toward Dr. Richman, as my RSD began after an arthroscopy of my right knee January 27, 2009.
I am very anxious about seeing anyone new, as like most RSD sufferers, I do not trust many medical providers at the moment. I am very comfortable with my PCP, Neurologist and Psychologist, and RSD Support Group at the moment. I am deathly afraid of Ketamine and am hoping that they may have an alternative treatment for me.
Any suggestions, advice, experiences, etc. would be greatly appreciated!
I am a nurse, so don't be afraid of using medical terms.
:confused:

Hi Deidre,

I'll make this short and sweet. I have been a patient of HSS for 7 years and a prior patient of Dr. Richman for 6 years and have had many surgeries there and still go to the pain center and see Dr. Gungor who is excellant also. I have also done boosters with both Dr. Schwartzman and Dr. Hertz both good doctors. Dr. Richman in my opinion is truly the best doctor I have ever worked with truly. Some say differently I don't understand why. He guided me through a 5 year nightmare of surgeries, ketamine procedures, epidurals etc. with compassion and respect.

Everyone else gave you great advise so I don't want to repeat.

Good Luck

Gabbycakes

Quote:

Originally Posted by Deidre (Post 699480)

Dr. Richman is my Dr for the 5 day inpatient infusion and I will be with Dr. S after that.

I first met with Dr. Richman a few weeks ago and could not recommend anyone so highly. In a time when most Dr's offices have become like factories, his office is the exact opposite. His bedside manner is amazing and he has to be one of the most understanding and compassionate Dr's I have ever met. I seriously wanted to hug him! His office staff can come off as a bit brusque at times but they really aren't. The nurse who first met with me was so amazingly kind.

Obviously his reputation speaks more of him then I ever could but if you can get an appt with him, I wouldn't think twice about it.

It is true tho that he does not take any insurance but his office will help you submit the claims. I know for many, this would make it impossible to ever get in the door which truly is sad but I've also now seen the difference between Dr's who are on insurance co.'s payrolls and those who aren't and it's amazing and worth it if there's any way you can.

If you have any other questions or just want to talk, feel free to PM me.

Dawn