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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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07-11-2010, 12:07 AM | #11 | ||
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In Remembrance
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Cure?
For RSD? I Pray! How does this machine work? What's going on? Why don't Dr. S know about this? Why don't My own Dr K know about this? (I'm gonna print it and take it to him).... What's going on? Has my head been overturned? AGH! THERE IS NO CURE! (Please, all, understand, this is only my sick mind at work)?!!!!!we prete (how do I spell that againP:?) bas! |
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"Thanks for this!" says: | Kakimbo (07-14-2010) |
07-11-2010, 12:23 AM | #12 | ||
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Hey Buddy,
We all know there is no cure for this, if you go to the website it talks about, I believe three to six months of pain relief. That sounds good to me. Maybe if it is continued every six months it may go into remission. We can only hope for pain relief. Just like the Ketamine, it gives relief. Peace my friend, Sandy Quote:
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"Thanks for this!" says: | Kakimbo (07-14-2010) |
07-11-2010, 01:35 AM | #13 | ||
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In Remembrance
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OH, Ho Ho,
Yes, for sure....... I didn't mean to induce my doubts, because after having this, since 83, I'm ready for anything! Heck, that's about half my life! Would I know what ta do??????? Maybe, it's the other injuries that have been incurred since...... I TRULY, wish all the best, and, I'm SO SORRY If I sounded like less!!!!!!!!! Please, Keep on, Keepin' on!!!!!! Pete ASB With wishes, prayers, and anything else I can do!! |
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"Thanks for this!" says: | Kakimbo (07-14-2010) |
07-11-2010, 03:36 AM | #14 | |||
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I don't want to rain on anyones parade either but it is not uncommon for RSD to spontaneously resolve itself in children. It also sounds like the OP's son managed to get early treatment which is good too for a better long term prognosis. I'm thrilled to hear he has found relief and pray that it stays.
Thanks for sharing the information with us. MsL
__________________
"When humans learn to be gratefully present every moment, they become angels. It’s not the wings that make the angel, but the message of courageous presence and creative acceptance, no matter what the moment brings: “Fear not!”" Gratefulness.org |
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07-11-2010, 05:35 AM | #15 | ||
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Quote:
I truly wish all the best results with this new found treatment. I am going to do some research on it. Not to change the subject but part of my problem with really feeling back to normal is the fact that some of my doctors still feel I have a neuroma in my arm where most of my pain is coming from. So I was advised to contact a doctor in MD, near Hopkins. Now keep in mind that my surgeon and PM doctor did a procedure to try and find this neuroma. When I tell you my PM doctor and I quote him " I had to beg Dr.......to do this", because the my surgeon who worked so hard to save the functioning of my arm was totally against cutting me again without seeing the neuroma on some kind of film, x-ray,MRI etc...But he did it and did not find the neuroma and yes it did make the pain worse. Sorry to ramble .....So, I contact this doctor in MD and he states to me that RSD in his world mean "Really Stupid Diagnosis",totally shocked me. Has anyone ever heard of a doctor by the name of A. Lee Dellon, MD. He's a plastic surgeon who work primarily with patients who have compressed nerves, and neuromas. Again I wish all the best and pain free days....... Gabbycakes |
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07-11-2010, 09:34 AM | #16 | ||
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Let me make one thing clear. Dr Damato is NOT saying he will cure or even be able to help since i have full body-but he thinks it is worth a try. He has seen great results with localized RSD-
Debbie |
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07-11-2010, 04:10 PM | #17 | ||
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H Debbie,
That is exactly what I read on his website, This is for pain relief, with non invasive treatment. It really sounds like something I would try for my daughter. Sandy |
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07-11-2010, 05:46 PM | #18 | ||
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Hi Pete,
I didn't see any doubts my friend! I think that everyone has had so many treatments that have been "the next great hope for a cure!" I know that my daughter is young and has gone through the Pain programs, and all of the kids that I know that go through the programs, only come out with pain management skills! They most always end up on some form of pain meds. It is inevitable...The pain doesn't go away. They are taught how to manage RSD in life. They are phenomenal programs and my daughter went through them two times and I would bring her back again tomorrow if I could. But, she always has pain. I don't believe that finding RSD early in children and getting treatment early is going to cure them, because I have lived that with my daughter. Yes she has been in some forms of remission, but never has she been cured by any treatments that she has been through. Now our next try will be this! It's just another treatment and perhaps a few days, weeks, months or maybe a year (God willing) of pain relief. I know that I have been through a lot with my daughter, and I know that I have had such great support from everyone here. I am sad today because my daughter is still hurting. So I am ranting and I apologize. So Pete my friend, we all have doubts! Hopefully, this will be it! Love ya, Sandy Quote:
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"Thanks for this!" says: | AintSoBad (07-11-2010) |
07-11-2010, 06:58 PM | #19 | ||
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In Remembrance
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Sandy,
I wish Only the Best for your daughter!! Yes, after 27 odd years with this, and other injuries, and like you said, being through SO Many other hoped for and cried for, 'cures', I've settled into a management type status. My heart goes out to any young person who acquires this nasty animal. I'm so stunned, (nothing less), about hearing of a possible cure, that the mere thought of not having full body rsd, makes my head spin! (remember, I have a tbi also). What would I do? It'd be an Entire new Lease on Life! Almost incomprehensible. My wish, is of course for a cure, or at least something not so invasive on my organs as the meds I take. But for Young people, my tears flow! I pray that this helps YOUR daughter, Sandy! And, anyone else who tries this. I'm waiting with prayers! love, Pete asb |
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"Thanks for this!" says: | debbiehub (10-11-2010) |
07-11-2010, 08:55 PM | #20 | ||
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Hi klmullican,
I just had a quick question for you about your son. Does he have fullbody RSD or is it localized in one area? I am beginning to think this new program works better if it is only in one spot as opposed to the entire body like me?? Thanks for your ideas and hope, kathy d |
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