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Are you playhing a game here?
Why won't you answer people after you were the one to post this? Pam
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Quote:
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I don't think anyone would be upset if any one of you were able to achieve some improvement or a remission - it would give everyone hope that someday they may have the same.
:grouphug: |
Well i am a reader, and i read quite a bit on this subject today, and it's relationship to rsd, in the Journal of Biomeds, and it seems that this is all still in the research phase, and i will say extremely interesting research, but in the conclusion of the article was this abstract:
Currently, according to the recently developed Dutch evidence based Guideline Complex Regional Pain Syndrome type 1 [80], nine drugs have been proven beneficial in the prevention or treatment of CRPS, including ketamine [81], gabapentine [82], DMSO crème [83], N-acetylcysteine [83], corticosteroids [84], bisfosfonates [85], calcium antagonists [86], ketanserine [87], and vitamin C [88]. Interestingly, 126 small molecules are listed as NFκB inhibitors in PathwayAssist, and 5 of these overlap with the list of drugs proven beneficial for preventing or treating CRPS (ketamine [89], DMSO crème [90], N-acetylcysteine [91], corticosteroids [92], and calcium antagonists [93]). i do not see much here, as far as medication goes, that many of the people i have had contact with who have rsd have not tried. but the article did say other medcations are being worked on, and that is good news for all of us. i do not know what point buckwheat was trying to make, but i do thank her for sending me on an educational mission that i will continue to follow. and i also would love love love to see someone get well! joan |
Joan the article was from Sweden.
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Why don' t you people with nothing better to do leave well enough alone.
Roz made a choice now can't you give her the common courtesy to respect that choice instead of picking at it like a bone and ripping it apart to it's last shreads until their is nothing left on it . She ended the discussion . You have NO idea what she meant to say - what she might have wanted to say and it is her choice not to so PLEASE do not continue a discussion without her with only negative intentions. If you want a new discussion on the topic START A NEW THREAD without negative connotations toward anyone. I have been around these forums since 1999 and this kind of energy can only do a grave disservice to the whole group. Group mentality feeds on itself and can go in a very negative direction if you let it for no good reason Before you post please think- Am I being kind? Is anything positive coming out of this? People will be scared to say things if you are going to go this route with them so please remember this forum is not your own. It is for everybody. Peace GnP |
YES BUCKWHEAT i saw that the article was from Sweden and i did read it all [a little deep but i got the idea of it] and several more on the NF kappa B and again thanks for the info. i hope we all get better. it is good to know that people from all over the world are working on ideas for our monster.
joan |
???????
GnP,
I understand that you are upset….It is easy to pick up on that in your post here. I do not know why Roz decided to delete her posts…it didn’t look to me that anyone had said anything here that was in any way sounding “upset” at all. It looked to me that they were asking for more info. Which, I took to be the point of Roz’s starting this thread in the first place, since he had referred folks to that other posting with the link in it (before deleting it). You do have to admit that a thread titled “Why Am I getting Better?” is a very tempting one to click on. For the folks that were fortunate enough to get to read the first few posts that Roz made, they at least got to see what she was saying. For the folks that came after she made her decision to delete her posts…well….you can’t really blame them for wanting to know what was going on, can you? I can understand…I really, really can. I didn’t see any of Roz’s posts after the one with the link to the other post that had the article in it, so I don’t know what, if anything, else she said on the matter. I do know that it would be very helpful to interpret the more scientific postings and articles for those of us who don’t get all of the medical jargon and technical way or writing. But, I think that this is a topic that has been talked about on here before (here, and on all of the old BT boards. LOL). Some folks just “get” the abstracts and articles and all better than others do. Some see them, and it is like trying to read Greek or something. I think that everyone here appreciates research…and I KNOW that everyone here is interested in anything and everything that has made anyone “Better”. Even us oldies are interested in such things, which is why I clicked on the thread myself yesterday morning when I saw it….and why I followed the link that Roz provided. A little more info, and a little better explanation would be really helpful if a thread/post like this is going to be started. I want to say that I really, really appreciate Joan for going and looking up all that she did….and then coming back and taking the time to explain what she had found and figured out in terms that are pretty easy for everyone to understand. I am sure that I am not the only one that appreciated her doing that. I do wish that Roz hadn’t decided to remove herself from the conversation that she started, and would have explained exactly what she was doing…..had been doing….has done over how long of a period of time…or whatever, for everyone who was interested enough to see what she had to say. I don’t think that doing that would have upset ANYONE (and Roz, if you did do that, and I missed it…I am sorry that I missed it, and I wish it would have been left up for me to be able to see when I came back to the forum. People ARE Interested in what you post….and disappointed when the posts disappear. If someone gave you some kind of crap on a PM or something…block them, and go on. Bullies are just that; bullies, and no one should give in to them, as they DO NOT speak for the majority of any group. If that didn’t happen….then I wish that I could understand why you are so worried that people will be upset with you? We all know that different things work for different people….I know that I won’t be upset with anyone who posts any kind of treatment that has been helpful to them…and I would not stand for them to be attacked for posting about it). I also agree with you, GnP, that we all should stop and think long and hard before we post or start any threads. We should think if what we are thinking about typing is going to be hurtful to someone….and we should think about if we REALLY want those words on the forum in the first place. If you think that what you are going to say is going to be hurtful to someone….then hold on to what you have written for a little while before you post it. Write it in a Word Processing program….and save it, or just let it sit for a bit. Then, come back and re read what you wrote. If what you have to say sounds hurtful or upsetting…then don’t post it. If it sounds OK…go ahead. There will always be people that are overly touchy and who read words in a voice that was not intended by the writer. There is nothing that you can do about those people….except to try to be sure that what you write sounds OK to YOU, and conveys the message that YOU want to get across without knowingly hurting someone else. We can’t take responsibility for everyone else who is on these forums, only ourselves. That means for what we write here, AND how we read what is written. It also means for when we get something started….and then just leave folks dangling….because that is upsetting too. Now, I hope that my words here haven’t upset or hurt anyone, because that is not what I intended to do at all. I hope that Roz will start to feel more secure here, and not be worried that she can’t post about her treatments and such, without folks getting upset at her. I don’t think that this is that kind of group at all. Peace to you…and everyone. :grouphug: :hug: Jose |
Hi Everyone,
Please stop being overly sensitive, for one it isn't healthy. I personally believe in alot of EURO medicine and alternative. I remember as a teenager on holiday having a common bladder infection and the Doc. spent 1 hour even though I was a ok, and needed basic treatment. If you do some study on the NF kappa B factor. You will see several different DX can come up, I mean several. This could explain why some of us have heart attacks, autoimmine, fibro, etc.... with this RSD DX hell. Having Docs in my family I was told to research when I got the RSD DX. Joan I have a very dear friend, who is a Cardio RN as well who really is a cut above. She knows medicine she gets paid very well, she never heard of it either. 1. I believe to ever problem their is a SOLUTION. 2. I also have had extensive blood work that no insurance company would pay for. Some of my MD's have wrote 3 pages letters to try to get things approved. REALLY 3. The pain is just a SX of are bodies being very unhealthy. cont.... |
Hi Roz,
I too am an avid fighter for what I believe in. I have fought for many things done for me even through my insurance co. I have a hearing coming up soon for a med. my Dr. prescribed for me for Cronic Fatigue. It isn't approved for that by the insurance but I have heard good things about it with CFS. I will have a phone hearing with them.
I just went through a mess with my Prevacid. I showed my nurse what to do to get it. I showed her what papers to send in out of my file Monday when I was in there and she called me Tuesday and said they had approved it. I don't have any Drs. in my family. Lots of Ministers though. LOL I do however have my PCP who has took care of me and Bill for over 17 years and he has actually sat with me and told me what to say to a Dr. I was going to see to get what I needed done. I have got the Senator of Co. involved in my medication fights, the State Rep, even **** Chaney. I got an email from him a couple of months back where he was working on getting the meds I needed. I have talked about that on the board many times. We have to be our own advocate. I believe we can accomplish something also if we keep at it. The Methadone I am on has now been taken off of the Prior authorization list and I believe it's because a group that I have worked with got it done. I have learned not to give up on things and that's what it takes to get done what we need to get better. If my PCP had not helped me I honestly believe I would be dead today from all I had wrong with me but he fought for me and taught me to fight for me. There is a solution to every problem and it's up to the person to fight for it. I think with RSDS there is no cure and yes we still are being treated for the symptoms not the cure. At this point that's what we have to live with. If they have found a cure, then I don't know of it and no one on here does so far. When that happens, we will all be on here singing praise for it. As far as the 8 symptoms, to diagnose it, I had never seen them listed before but there are more then 8 that even goes with the RSD in my opinion. I was diagnosed by a hand surgeon that I had went to see for other hand problems. He ran all kinds of test on me and saw what shape my hand and arm was in and knew I had it. All of those symptoms don't show up in everyone anyway I would say. Thanks for bringing this conversation to the forefront, it's very interesting. Don't feel bad about coming up with new info we need that. We know there are new things being tried all of the time for RSD so it's good that they show up on the forum. I still swear about blocks, TPI's and PT and a lot of people don't get the relief I have had with them. My RSD is in remission. The only time it rears it's ugly head is when the weather changes or I screw my body up myself again. We are all at a different level with it and have different things that help us. I realize also that a lot of the people on here aren't in the shape mentally to fight for what they need. That's how I started out. I signed myself into a mental place because I thought I was going nuts. They threw me out after 3 days due to not being able to take depression meds. That's when my PCP took over and said he'd get me through it. A lot of people don't have that kind of help and aren't at a point yet to where they are able to fight. I hope they all get to that point someday. I believe the more of us that fight this battle the sooner we are going to win it. Ada |
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