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Video on YouTube
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Thanks for sharing..............maybe with this I can have my family understand what is going on with me. I am thankful that I am not that bad. I could never afford to go to Germany tho.
DebbyV |
Mad
I didnt like that clip when I saw it the first time nor could I watch it this time- They make it seem that if you go for ketamine you will get cured- Everyone I know who has gone thru the intense ketamine including myself, either got temporary relief or no relief-(2 of them went to Germany for the coma tx) I get angry when Dr S shows the very few people who have had successful results instead of focusing on the other magority who can not get relief and suffer so much!!!!!!!!!!! And if over 1 million people have this it shouldnt be so mysterious should it? I mean shouldnt there be more people out there making this disease more known and understood. I know 2 people who live within 2 miles of me who have it...
Sorry-just venting!! Debbie |
I had to post here too!!!
I posted my rather long and vented opinion on the other identical thread and also posted it here so don't read it twice it's the same one!!! :D
May I thank DebbieHub for posting her opposition to this. It is good that we can debate diffferent articles and stories and have open forums for different opinions. I say GREAT for those it works for, but whose to say it will work for everyone! Deb your right they almost do come across with a "Blanket Statement" offering a cure!. I am thrilled for this young lady and I am even more happy that Paula did this segment so that hopefully millions of viewers might now have three little letters tucked in the backs of their minds. RSD RSD RSD RSD!!!!!! Now, the unfortunate part. The FDA!! :mad: Of course haven't YET! and may never approve the Coma methods in this country for whatever reasons. Therefore keeping insurance companies from ever allowing us the benefit of knowing what it might feel like to have one freaking day of our lives - just one day mind you - PAIN FREE! :mad: :mad: In my twisted little mind I have always believed that the control mechanisms -the government, pharmaceutical companies and the insurance companies have over us, is the unwillingness to completely cure us of all diseases. Therefore leaving us needy and reliant on Government Funding, Insurance Policies and Pharmaceutical Manufacturers producing medications for our medical needs. Bottom line - MONEY!!! It's all about the money. If you or I could afford to go through what this young lady went through and than only required an occasional booster imagine the millions of folks who would also do it? The amount of money that would be lost through the above mentioned agencies would be astronomincal. And I for one are now on limited funds without work like so many of us with RSD. And even those of us with work don't find ourselves any better off without the help of our insurances. Okay - I think it's time they take me away in the paddy wagon. Do I sound crazy? Even a little paranoid? I honestly think it's a case of deliberate Beauracratic Red Tape. [U] THERE IS NO MONEY IN CURES!!!! [/Thank you all for wasting your time reading my lengthy post! If you feel it is time for the Jacket and Paddy Wagon I'll understand! :D :D Mark :) |
Hi Mark, As always Thank You so much for sharing this with us. Actually Good Morning America showed something similar to this last year. Mt Dr immediately told me about this procedure and he had also heard about this treatment at a seminar he attended. I do think for those that it works on, and the ones that can afford it, it's great, but of course like everything else, it doesn't help everyone. Like this article stated only 15 of the 30 patients that had undergone the coma induced treatment was relly relieved of their pain. Of course there is always hope that eventualy they will come up with something to benefit us all.
Thank You so much for all of your helpful topics.. :) Love ya, Janet |
Just some info on what I've been able to find out about long term or longer term success with Ketamine.
My doctor has been looking into this but is extremely concerned about the fact that the doctors he has talked to tell him him that the long term success they are finding is among the age groups younger than 25 who are still (luckily for them) in the acute stages of RSD. Now I'm not saying that those of us older won't have or don't have success... I'm just relaying what my doctor has found out. I don't understand why these results aren't readily available or why we mainly only hear of the successes and not the failure or lack of success of this treatment. My thought along with my doctor's is... this is a lot of money to spend for what he calls a less than 50-50 shot at it working for someone who's over 25... I know there are no guarantee's in medicine but ideally, I'd like a little more research and a little more success with this treatment before I can think of shelling out the 27 to 50 thousand plus on this. (By no means to I have this kind of money.... but if this were my last hope and there were greater numbers of success... I'd beg and borrow to have this done....those are the $$ amounts my doctor has been quoted by the doctors here and in Germany.) I have to add that I am extremely happy that this treatment does have success for some!!! I wouldn't wish this monster on my worst enemy!!! |
Abasaki, thank you for posting this.. I didn't know what the price amount was, but am glad to see that your Dr told you an approximate.. There is no way I could ever afford that. and even if I did have insurance I guarantee they wouldn't cover it. I do hope and pray every day that they come up with something to help all of us, and like you, I would not wish this on my worst enemy either. I have to say there are a few people who don't think there is such a thing as RSD that I would like to experience it for at least 3 hours.. I know that sounds cruel, but you know that unless you have been cursed with this disease you cannot fathom the pain.
I am so glad to be here with all of you great folks.. You really do make my days brighter. Love to all, Janet |
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