Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 07-20-2012, 05:15 AM #11
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I got to go with everyone else. Esp. after watching Dr. Phil and the phonnies in Floridia that claim to be Dr.'s and aren't.

Please, I know you want to do everything possible for your daughter, but this one, just doesn't sound right. I would like to suggest Mirror therapy or HBOT as lit Love suggested.
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GOD help me be faithful in the midst of my suffering. Alt1268
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Old 07-21-2012, 10:19 AM #12
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I don't know if this could help, but I've been reading about the Boston Children's Hospital in Mass. On their website, they say that most of their patients that have been referred to them have CRPS. It sounds like a nice program to check into.
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Old 07-24-2012, 12:16 AM #13
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Quote:
...., has anyone else heard of this or Dr. Nick or have any information on this?
Mike
I know your mind is your strongest asset in this horrible situation! Last year after a operation to help my elbow to move more easily my crps was very bad! After 5 weeks my whole body was full of spasms, I couldn't touch my self and vibrations (walking, cars... Everything) caused severe pain. I went to a occupational therapist, who told me it was in my mind and I had to change my mind about the pain! It was a horrible 2 months of hurting myself (with a feather later a brush, rough ball and a vibrator!). I cried and cried! It was really bad, but I changed my mind about the pain. I not fussy about clothes anymore, but I prefere clothes that don't irritate as it makes the mind over matter easier. I use my arm and when the pain becomes intense I stop and lay down and read. 30 minutes later I'm almost spasm free again. I also found that when I get upset the crps is worse. My swelling and discolouring has turned less less over the years. I lost almost all my muscles but prayed hard and started using my arm again. I have to force myself to use my arm although it hurts! I am so blessed. My arm is almost normal after years. If only I can stop the pain! I can controle it some with my mind. I think hypnosis will help some (this is a physical problem, no matter how hard you try, you can't turn your arm black and swollen in under a minute with your mind!). I know laugter, love and friends help! I think for a parent this must be hard!!! I'm so glad my kids are healthy. I don't think hypnosis is a 100% cure but it a tool to help! Good luck to you, your daughter and family. I'm praying for you!
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Old 07-29-2012, 09:44 AM #14
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As a parent you should do everything in your power and beyond to ensure that your daughter will be cured one day because it's a horrible disease. And the highest suicidal rate of all diseases. Did you talk to this doctor? And did he tell you he could cure her? Shouldn't you talk to few of his patients that he cured to verify? I don't know this doctor but anybody claims that they can cure anything I first want to talk to several patients to verify and meet with him for a consultation. You asking people on this forum who are not his patients, how would we know? We all have opinions but we need facts.
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Old 07-29-2012, 05:49 PM #15
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Quote:
Originally Posted by Abcd1234 View Post
As a parent you should do everything in your power and beyond to ensure that your daughter will be cured one day because it's a horrible disease. And the highest suicidal rate of all diseases. Did you talk to this doctor? And did he tell you he could cure her? Shouldn't you talk to few of his patients that he cured to verify? I don't know this doctor but anybody claims that they can cure anything I first want to talk to several patients to verify and meet with him for a consultation. You asking people on this forum who are not his patients, how would we know? We all have opinions but we need facts.
There is enough traffic on this site (and many members are active at other respected sites) that if there is a miracle cure, in all likelyhood someone would have heard something. Us expressing concern that limited resources be used on what is most likely a scam, shouldn't come as any big shock. The amount being charged is substantially higher than what hypnotherapists usually charge. Maybe, it's worth it...

I'd hate the OP's child to miss out on therapies that have proven to work for others, and be used as a guinea pig. Those of us that have had RSD for a long while, have routinely been promised that this med-or that that treatment-will put us into remission, and so we push forward optimistically, but realistically, that there is no ONE cure.
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Old 08-04-2012, 03:17 AM #16
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First of all, I came on this site to help people and to share my story like i have on others. *edit* I told you I have nothing to gain. Nada, nothing, but to give people the hope that you can get better. My parents spent thousands upon thousands doing what you are all doing. You don't have to listen to me. But yes, I was atrophied, obviously. I went off of fentenyl cold turkey and had horrific consequences to that however, I am fine now. I was just trying to help. *edit*.Thats fine. Ketamine has done a real number on my body. Aren't you all sick and tired of the prison you are in? I would be. I was just trying to help. Shame on me for giving a care about anybody with RSD anymore. It just bites me back. I have helped plenty of people and I have come to a bunch of close-minded people who like invasive procedures. You keep doing that while I get my clean bill of health and keep swimming and running on South beach . I am sorry I even came back to tell you all how great a doctor I found and that there is a light at the end of the tunnel. Keep doing what your doing. It's working so well for you so far. By the way, I do not work for Dr. Nick. He owned the rights of my video. Hope someone on here gets help soon before you get as sick as I was.*edit*

Last edited by Chemar; 08-04-2012 at 06:32 AM. Reason: quoted post has been edited so have edited your post in accordance
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Old 08-04-2012, 10:40 AM #17
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There is a reason why medical trials are used in sufficient numbers and documented very closely.
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Old 08-08-2012, 03:05 PM #18
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I have been reading about that doctor as well and spoke to Elena in his office. She too promised 100% cure. She told me it was 2 sessions per day for four days at a cost of 3k per session.
There was a girl on FB that had been there and claims total success. I think you can find her at RSD Really Sucks Dystrophy. She also did a radio show last week online with Trudy Thomas.
I remain skeptical but would love to be proved wrong.

Liz
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