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Peace
GnP

It sounds like things are happening for RSD in your area that is good. As you said, maybe we will see other states mimicing what is being done there by Richard Dean Andersen and the other stars that jump on the wagon for RSD, whether they have it or not.

Thanks for the info on what is happening in Ca. I think that's a good beginning.

Ada

Hello, GP,

I think you missed my point in my last post, which was (admittedly), understated: It is possible that Paula Abdul is taking an amount of ketamine necessary in order to control her symptoms, and the side-effects of that dosage are responsible for some of the incidents so widely discussed.

Specifically, I wrote: I don’t think it would be difficult for someone in her position to find a doc willing to give her enough ketamine to keep her symptoms under control (and hopefully not as much as some might prefer).

As a former social worker with drug counseling privileges at a state psychiatric hospital, I disagree with your opinion that ...she has the twitches and head turns of a long term(opiate) abuser… first because these are not acknowledged signs of opiate abuse, and also because they are typical of many types of drug and alcohol intoxication, and thus cannot be excluded as indicators of ketamine use.

In previous posts I have talked about my misgivings after reading articles describing incredible improvement in CRPS patients following 5 day ketamine infusions, and noted that forum members who have undergone this therapy did not report achieving these remarkable results; both of which led me to conclude that if my RSD was severe, and if I had the money…I would prefer euphoria and activity over pain and disability any time.

Also,her RSD is limited to a rather small part of her body.Her other pain issues are from disc and other back, neck and other injuries. Although you claim to know her, and to have friends, therapists, and physicians in common, I have to question whether you know enough about her RSD to dismiss her symptoms as not sufficient to justify a drug that (I hope) would be prescribed by a physician. I also wonder how one can discuss whether she abuses opiates when she has (according to you), multiple other pain issues.

She may not be functioning at a level that most members would like in an RSD spokesperson, but since she appears to continue to make money and enjoy life, and especially since we agree she is probably not interested in becoming anybody’s RSD spokesperson, I hope we (the forum) might want to talk about what ketamine dosage might be most appropriate to control symptoms, and what sort of side-effects we would be willing to tolerate…Vic

Hi,

As a regular recipient of Ketamine for over a decade now I can assure you that any does of Ketamine sufficient to cause hallucinations and euphoria would not enable anyone to dress to the hilt, put on make-up and work in front of a camera.
Ketamine when used properly in a well supervised manner rarely causes hallucinations to any degree and certainly not euphoria.

In my Ketamine experience I have only ONCE ever experienced hallucinations and that was my very first when it was still some what experimental.

The aim of Ketamine therapy is to relieve pain with a dose that enables lucid thought and quite normal activity.
*This of course does not apply to the coma therapy which is an all together different process.

cheers
Tayla

I don't know much about the Ketamine but I did read that if they keep the dosage low then the hallucinations don't happen. I think Sandel pulled up an article on that just last week.

My feelings is as Tayla said about her Dr. If I went to my Dr. and he saw I was a mess, he'd reem me a new ***** and have the girls take me home and then ween me down off of my Methadone. Then if he couldn't get me straightened up, I would be gone. I saw that happen to a lady that he had been seeing for 15 years.

I don't know why she hasn't been investigated for the way she acts. They sure seem to be going after everyone else that's doing drugs on TV. Here she is on a show for teens and this is what they see and think it's ok that she acts this way. I don't even think she's ever contributed enough to the acting and singing world to be deemed a star.

She must have a Dr. that will give her anything she wants whether she shows up to see him or not. If they took what happened to Anna Nicole then they would start checking people like her out.

If I was so high on drugs that I went into my Drs. office or made a fool out of myself in public, I would be so embarrassed after I got straightened up from the drugs that I would crawl under the floor. The table wouldn't be low enough.

I don't want to set that kind of example for my kids and grandkids either. They know I am on heavy duty meds but they can stand me by the two friends that grew up with my daughter and see that I act normal next to them. They drive this way too. One of those girls called me one evening, she had taken her son to the Library. She sounded so drugged out that I actually told her that she didn't need to be driving in that shape.

As far as Paula, I sure don't hate her. It's just that she needs help the same as Britney Spears and because they are movie stars they can be the way they are and the world seems to get enjoyment out of it. I believe that they are being made martres when they die like Anna Nicole, instead of being cared for before they die.

I do see the problem with some Drs. handing people any meds they want and at any dosage.

Ada

I don't know if anyone realizes this or not but Paula has had several fusions in her cervical spine. I was watching a documentary about her life and her doctor was on speaking of it. She even stated or admitted to acting loopy but said she couldn't help it (when American Idol first began). She said she was sitting on her hands to keep from squirming from the pain. Since then I have read that she receives Enbrel injections. Now...how true all of this is...I don't know...I am not her doc and wasn't there. And MAYBE they have told her it is RSD but it could also be Central Pain and on and on it goes. But it DOES appear, at least as of late, that she is NOT acting as loopy or fidegty. So, perhaps the injections are working or whatever it is she is doing. But Vicc is right...she does appear to be moving on and enjoying her life. So, what she is doing or taking seems to be working for her. In my own opinion, I can see a difference for the better...at least so far.

Hi Kath49
It is great if she is moving on with her life I don't think any of us would wish otherwise.
I sure don't know her but I do know what I have seen and I don't believe drugs or pain could be responsible for her promiscuous behaviour with a contestant on American Idol.
If this is who she is and has no problem with her behaviour, then nobody should caste judgement on her as it is her business BUT I think, as the discussion was should we support her as a spokesperson for RSD seeing she is so exposed in the media , then I don't believe that she represents the disease in a positive manner based on all the negative publicity she has aquired over the last few years.

Her publicity machine is definitely working however--I bet she would never have expected to be a topic of conversation on an International Forum on Neurology.
Bless her in her life, I wish her health and happiness,but just not as my role model for this disease.
Love Tayla

Here Here Tayla

I don't know how many of you recall but the ONLY reason PA ever came out with a story of Chronic Pain was that it coincided to a tee with the time she was accused of having intimate relations with that contestant on AI.
Next thing you know she had a "People" cover.
Otherwise we would never know about her CP issues and other ills .She would never have told.
Normally I don't follow these things but when it comes to RSD and CP I am all ears
That my friends , is the publicity machine in action- all spin-no basis in truth or reality
I have also been on oral ketamine for 3 weeks and it is not something to be taken lightly , flippantly- without forethought afterthought nor for fun. That is all that I will say on this matter - we have beaten a dead horse .....

NOW LET'S GET BACK TO POSITIVE THINGS THAT ARE FINALLY HAPPENING FOR OUR DISEASE !!!
"History in the Making" is not some little event.
"The House of Blues" is a Los Angeles Landmark not some little dive.
These events WILL have a trickle down effect .
Celebrities WILL attend and whether you care about them or not they bring the media and our disease will no longer be in the closet.
So let's get past Paula A and move forward to the next chapter.
There are a lot of people - some terribly sick - who are working their butts off to make our world a better place - They are working for recognition for this disease which hopefully in turn will make research dollars become a reality .
Let's focus on the positive here as a lot -I mean a lot of good stuff is happening.
I have spoken with some top docs too and as soon as an event captures the credibility it hopes to achieve they are ready to get involved for the next one .
It is only a matter time and not too much time at that

In peace

and

IT IS OUR TURN


GnP

I agree.

But where did I say she should be a role model? I am not saying that all. What I wonder is...and because of the fusions...could it be something other than RSD?

I am excited about the things you say are going on in LA for RSD- Is there anything we can do to help and to follow what is happening? I tired to PM you but that does not come up as an option when i click on your name...

Thanks for the optimism!!

Debbie