Support Paula Abdul
 

all RSD sufferers lets support our fellow sufferers. go to USmagazine.com
there is an article written about paula being "wacky" while on telly. i have posted 2x now that she is telling the truth about not taking drugs or drinking. i also have difficulties sometimes when i speak. also there are days when i cannot sit still at all. these actions don't mean i'm taking drugs or drinking. so i would like you all to go there and post comment about your RSD. let's support paula.

Hi Duchess,
 

We have talked about Paula Abdul before on here. We discussed what everyone thought about her being a spokes woman for RSDS.


This is my feelings about her from all I have seen of her. She is a fly by night with no lights on.

I honestly don't think she would make a good spokes woman because she is either on too many drugs or drinks with the drugs. I can't count how many times that woman has been on TV and acted drunk I honestly have never seen her act normal on TV.

She never talks about her RSDS. All she has talked about on tv is her anorexia or bolemia. RSD has been mentioned only vagely one time in a magazine by her that came out last year that I read.

I would like to see a famous person become a spokesperson for the RSD such as Micheal J Fox did for his disease. But in my opinion she is not it. I don't want people to think I have to be overmedicated and act like she does with RSD.

Ada

But- I am very surprised that she does any interviews when she in in that out of control condition - whether it is from pain, meds or other reasons.
It just doesn't reflect well on her, if it is pain or something causing her to slur and act drunk then she should say so during the interview.

I thought I read that she was cured or in remission of her RSD??.

Jo,
 

You bring up an interesting statement. IF she is in remission or cured what would be her excuse for the meds and acting the way she does.

I am thinking I read awhile back that they decided she didn't have RSD. I heard that on TV.

I did see E News channel when they did her story and I don't think RSD was even mentioned if so it was only once.

She just acts too out of it at any time to be acting normal.

Ada

hmm..
 

I think we should suport her, (I do) it;s not like we are asking her to be our spokes person, that someone needs to be pasionate about getting the word out and she is not that person.

But I do not think we should abandon or condem her actions if we do not know of her circumstances, she may be changing meds or anything, I do not have a day where my mental facultys are very sharp for long.

happy valantinesday everyone.
Super soft hugs,
Sandra

Paula
 

Paula does not have RSD - The statement that said she had it was retracted from her doctor -she does suffer from pain - I think its arthritis

We do need to find a famous person who can help us!

Debbie

Hi All,
 

I may have came on a little strong for you guys but I feel it would be nice to have some famous people involved in our fight as they do for Cancer, Parkinson, Alzeimhers. I would like to see them fight for RSD and Fibro since they both hit so many people and we aren't getting the funds to do enough research.

I still say though that Paula Abdul is a bad example of a famous person. I have never seen her on tv that she acted normal. Fox News yesterday was discussing her and said they thought she had more then just coke or pepsi in the cup she drinks out of on American Idol.

I have seen 4 friends get addicted to drugs from having Fibro and Back problems. One's name was just in the paper Monday on a 15,000. bond for causing a fight in a hospital. I watched her and her sister both get so hooked that they are always so drugged up that they shouldn't be driving. I saw a 64 year old friend get that way. I have another friend that got that way and thank goodness he got off of his meds after back surgery and is now back to work.

I have RSD and too many other things to mention and my Dr. and I were discussing Paula Abdul yesterday and he was talking about how she use to be such a beautiful woman and what went wrong.

I know we are all in pain, I know we have to have some heavy meds. I'm on Methadone and as I told him I never want to get to the point that I have seen these other people get too. I've talked to people on the phone that are so drugged up you can tell it.

I'm sorry if I made some of you angry but I just don't agree with what she is doing with her life.

Ada

I agree, Ada. If I didn't tell ppl that I was on fentanyl and percocet on a daily basis, nobody would know. A GOOD pain doctor will control your pain to a semi-tolerable level, but not have you so drugged up that you cannot function, or APPEAR to be on drugs.

The way my pain doc explained it to me, pain medication works with the part of hte brain that is responsible for feeling and sensing pain. Those of us who are really in pain and who take pain meds, won't appear "drugged up" because the drugs have a "purpose" in that area of the brain.

BUT

Those who AREN'T in pain, but take the pain meds for recreational use WILL appear "drugged up" because the drugs DON'T have a "purpose" in that area of the brain. Therefore, the "purpose" becomes "getting high."

When you see someone on pain meds who ACTS stoned, its eithr because they MAY be too highly medicated, or they don't have pain and are taking the meds recreationally.

That's why, my pain doc says, when he sees his patients, if they appear to him to be non-functional, as he would say Paula Abdul is, he would reconsider either A). their dosage, or B). the fact that they have pain at all.

Paula thread
 

Hi Lisa,
I'm Cathy and just joined NeuroTalk (thankfully) last week.

I really don't have any opinion about Paula Abdul. I want to thank you for the explanation about how pain medication works. I can't take any of the drugs that have codeine in them (which is just about all of them) so doc gave me darvacet (propoxy) and I've always said that I've been aware that the pain is there, just that I don't seem to care as much that it's there. The explanation that pain meds work if taken correctly in the area of the brain that senses or feels the pain is terrific. At least I know that some days when I take it, that is the reason I can still work and get things done.

So thanks Lisa for passing on that info. It's helped me and I'm sure others. We can read all the literature and side effects, etc., but it's only in experience that we become truly knowledgeable and that leads to the blessing of being more compassionate toward our fellow sufferers. There is truly a reason for everything, even if we cannot see it currently.

Have a wonderful day Lisa and all.
Cathy

Paul's treatment
 

Hello everyone,
Although I don't post often I do read the post and felt I had to respond to this thread.


I have mixed feelings about Abdul and wish that if she does have RSD, that she would become a spokesperson for RSD if she would be serious with her discussions. Another person that might be good to speak about RSD is Barbara Mandrell as her husband has RSD and this is why she left Tenn to be with him and take care of him. She would be a great asset to the RSD community if she would go more public about this.

I would like to say that I have had the pamidradate infusions that Paula was given and they did help tremendously with my burning and sensitivity. I have these infusions every 2 1/2 - 3 months as 3 day/outpatient treatments. My Dr began with these infusions after a friend of mine that was going to him ask about the treatment Paula had reportedly had. Our Dr called Abdul's Dr and received the information ref the infusions and now is giving them in our area. The treatment DOES reduce the burning of my RSD which is now full body. I would say it reduced up to 50% maybe more at times. It has also helped with the sensitivity that I have in my extremities. continued to have flare-ups due to weather. The only adverse reaction I experienced with these were flu like symptoms for the 1st day or 2, then it began to really reduce the burning.

I wish Paula had spent more time promoting these infusions and letting people know just how much they helped. When you can get up to 50% reduction of the burning it helps both mentally and physically. With reducing both it enables you to do more and be more active, not to mention being able to reduce meds if at all possible. This is my goal, to hopefully reduce my meds which hopefully will make me more alert and less side effects to deal with.

I strongly recommend these infusions to anyone with RSD, it seems to be much safer than some of the other options we have available to us at this point.

My WC ins did pay for these each time I have had them. I was told it was doubtful they would but they did. The cost was approx $1,300.00/day X3 days. Which is also cheaper than some of the other meds and procedures available.

I hadn't heard about that before - thanks for posting it.

Ditto!

Some people have "drugged up" reactions to some medications, even if they ARE in pain. Some people cannot tolerate certain medications, and their body will react in this way.

If this woman DOES truly have pain, sounds like it needs to be adjusted or changed!

RSD Nightmare!
 

I was diagnosed with RSD in 1999, and it was unbearable. The doctor told me they had never seen the skin changes so quickly. But the fast skin changes was lucky for me, that the doctor recognized the RSD and started immediate Stellate Ganglion Blocks. I have some damage to the bone and muscle, but not too bad, and I had a severe case of RSD that went into remission with the blocks. I now do not have to take pain medications, except for over the counter, and I have been truly blessed. What I do not understand, is that if Paula Abdul has RSD like I had, there would be no way for her to work (it is too hard to just breathe and not commit suicide) If it is in remission or cured as she says, why all the drugs?

hmm..
 

Or perhaps they have no tollerance for that particular drug :rolleyes:

I want to welcome Cathy and Bitty to the group, nice to see you posting.

An HELLO Ness you have been missed my friend.

Hugz all,
Sandra

Hello I hope everyone a pain free day. I do not know why this was brought up besides she is on tv but we should not judge her if she has or does not have RSD or anything else to say drugs are causing her to be out there would be wrong for all us to do.
Paula may be the type of person to be out there as she was a cheerleader and a singer so her being hyper or just out there would not be strange and she may just be strange. Again to say some may need their drugs changed is wrong as I take allot and I may be out there too as I have been but I need the amount I'm on to function somewhat normally which would be just being able to handle my day.
I'm happy to hear about remission and being caught early too we all need good docs like yours :)
What one person takes for relief may not be what another takes nor needs,
flippn

How absolutely correct Lisa. Anyone behaving stoned whilst taking pain meds is overmedicated for their degree of pain.
I am on large doses of narcotic and not a soul would know as I am as alert as the next person.My pain soaks up what I take as I take exactly what I need.

I am less forgiving of Paula than some :rolleyes:---any 40+ women coming onto a contestant half her age because she was "out of it" is not a role model to me.
Cheers
Tayla:hug:

First of all if any one has any doubts about Paula's drug use please watch E's "Hollywood True Story" on the woman- all doubts will be erased.
The woman can barely make a complete sentence for any part of the interview and she has the twitches and head turns of a long term(opiate) abuser.
I live in Los Angeles and it (the town) as well as the RSD community itself are both very small indeed .
I know her and we have many friends , doctors and therapists in common.
She does NOT want to be a spokesperson for this disease-NOT going to happen .
If she were coherent it would be an excellent opportunity to show that with proper supervision and care( and many assistants:D) one can enjoy a full life with some proper pain management.However that is clearly not the case and her "celebrity "is too important to her .
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.
I also don't think ketamine is her drug of choice.I have spoken with many doctors on the topic and daily long term use has not been studied extensively
It has thus far been shown to be quite toxic to the liver when taken in that manner.
Having said that support is one thing- There is no reason not to"support" her from afar - without taking it any further .

Here my friends is the GREAT news .
Things are really starting to happen in LA .
A group called "Life Goes on " started by a woman who "had" full body and is still sick with RSD is holding a first ever Benefit at the "House of Blues" in LA
on Sunset on March 3rd(our awareness month!) to benefit RSDer 's who lost everything in the California wildfires.Her long term goal is to open an RSD clinic in order to make early diagnosis and treatment possible for everyone !!!!!!!- and to help with housing and transportation needs etc .Her vision is large indeed !. More benefits are planned and she is getting the word of RSD out which is most important of all - this type of thing will spread to other cities once a prototype exists .She is calling her event "History in the making"
Another group called "Hollywood Cure for Pain ":confused: is holding benefits all over the place in Los Angeles .
It is run by a guy with RSD and his goal is to raise awareness for RSD.
Lisa Marie Presley is involved and he is slowly moving up the Hollywood pecking order to get people involved in the cause .
It has grown extensively in it's very short existence an it is this guys full time job.

I will be attending all of these upcoming events and will report back here.
I have asked some friends of mine to play her benefit-fingers crossed- it is a
small venue for them:rolleyes:


So things are looking up for our little known but not uncommon disease .We do not need Paula Abdul!!!!

I hope you are all feeling OK

Much pace
GnP

PS.
Randy -the guy who did the Long Beach Run this year in December is planning a bigger event for next year.( I think Sandel posted about it :))Richard Dean Anderson was there along with the" Laker girls".They had great raffle prizes donated .
I just received an email from him and he told me not to be surprised if events like his popped up all over the country !!!!
He is not even afflicted.He is doing all this for his mom - what a guy :)
RSD awareness LIVES and it is spreading
It is OUR TIME!!!!!!!!!
To quote Randy "THINK BIG "

Much peace
GnP

Getting involved
 

Hi,
I live in Los Angeles and wanted to know how I could get involved in RSD awareness.
Thanks,
Moselle

PM me Mo :)

Peace
GnP

Hi 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

Hi,
 

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.:eek:
Bless her in her life, I wish her health and happiness,but just not as my role model for this disease.:)
Love Tayla:grouphug:

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:D
That my friends , is the publicity machine in action- all spin-no basis in truth or reality :rolleyes:
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?

GnP
 

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

One of the doctors I was seeing 2 yrs ago when PA came out that she used Enbrel for RSD told me that her doctor retracted that statement & said she was using it for Arthritis only, was because at that time atleast, Enbrel was not used for off label purposes at all. There was talk of putting me on Enbrel except that I, personally, didn't have any of the specific Diagnosis' that Enbrel was being prescribed for. And if you didn't have one of the diagnosis' that it was legally prescribed for, you could not get & use the drug Enbrel.

This doctor I saw at that time had been involved with a major study of using Enbrel for RSD at the University of SF Hospital or whatever hospital it is in SF that she had been at. I can't remember as she is no longer in my doctors office & I did only see her twice. But anyway, if she doesn't want to be a spokes person then that is that.

I agree with GnP we need to quit beating a dead horse.

And I agree with herthat the upcoming events in LA are a very good thing. Please keep us up to date with it all ok? And I didn't know you knew all those different celebrities including PA.

DebbyV
ps I watched AI last week & I didn't see any enebriation in her at all.....

I have to confess that I tried to hijack this thread. Paula Abdul was obviously stoned and I wanted to talk about why.

I think the only reasonable explanation is that she has RSD; realized her announcement could kill her career (it could have), so she denied it, and she found about ketamine. I brought this up before, and everyone agreed I was wrong. I didn’t push it because I didn’t see how it was relevant to anyone here. Now I see that it is:

People I care about are wasting their money and their hope when they try ketamine. I can’t prove anything, but I can present enough evidence to convince someone that I’m right. I hope someone asks for that evidence.

Before I talk about that, however, I want to say a few things about me; because I claim to be an expert in drugs and drug behavior, so I need to tell you why you should listen to me. I also claim to have been honest in every post I wrote here or at BT.

Those who remember me from BT know I revealed things about my life that they probably wouldn’t. Whether people believe I’m honest will determine whether you listen to me.

The State of Kansas broke some rules in order to hire me as a psychiatric social worker just 18 months after I earned my BSW. Until then, a BSW had to have 5 years of related experience. I am a court-qualified expert in psychology and substance abuse. My superiors recognized me as best qualified.

It’s ok to ask why you should agree with a social worker who disagrees with the entire medical community about the cause of this disease: I tried to write in a way that showed I knew what I was talking about, and everyone agreed they couldn’t understand what I was saying, I’ll try another way.

But now I’m saying that I know what I’m talking about when it comes to drugs and the penalties of RSD, so when I say I know why K didn’t work for most people here, I’m giving you the professional opinion of an expert. You can choose to believe that or not.

I can prove that researchers weighted the largest “study” on RSD and ketamine, in favor of ketamine. I can prove it, but I’m not going to deliver another Vic Lecture: I’ll present my facts to anyone who sincerely demands them. If no one asks, I can tell myself that I tried.

I can explain why I’m convinced that Paula Abdul is taking larger than approved dosages of ketamine. In addition to being a qualified expert, I also have 20 years of experience using and abusing drugs and alcohol, and hanging around with people like me. I have seen every stoned state imaginable.

I have never seen a drug that could sustain that sort of euphoria, and I can’t imagine why she would use K unless it worked for her. She knows the price she’ll pay.

In another post I said I would trade the rest of my life for 3 years of euphoric activity instead of pain and disability. I would. I think I would have refused it in 1979 (when I was first disabled), but after looking back on 28 years of my life, that would have been a mistake. But I was never offered that choice, so it doesn't matter.

No one here will get to make that choice. You have to have money and status to get a doc who’s willing to lie about dosages, so it doesn’t matter. It does matter that the experts have cooked the books in order to get people to pay for therapies that often fail. It matters because you will be wasting your money (if insurance will pay for it, you I,m ok with wasting their money).

All you have to do is look around here: I think there may be two people here who report long-term remission after ketamine; the rest don’t seem to differ from those of us who never tried it. It doesn’t work for most people and it probably won’t work for you.

So, if you want evidence proving the experts cooked the books, ask for it and I’ll provide it. If anyone wants to encourage others to try it, I’ll let someone else ask questions. I would just like to see a real discussion about ketamine; not just an impressive looking report that no one actually studies…Vic

:)Wan't you who mentioned "role model' Kathi but was mentioned in a previous post in another thread about her.
Sorry if it seems I was quoting you.:hug:

Cheers Tayla

Hi,
 

I don't think it matters what drug she is on. We most likely will never know. Most of us agree that she acts drugged up at all times.

As far as denying she has RSD to save her career, if that were the case then we'd have all of the other actors denying what they have such as Michael J. Fox until he could hide it no more. Why hide it for that reason if you can still get by with being on TV?

As far as Ketamine, I would think it will be like any other drug out there for RSD, it's a hit and miss. Where it helps one person, it won't help another. Same with the side effects, where one person might have them, the others might not. We just all try what we feel we need to to get better.

It goes back to getting the disease calmed down to where a person can manage without being suicidal or getting them to be able to do some of the things they feel they want to do.

I don't know if they ever will find a cure for it but if they could just find a faster way to get people into remission, that would be a blessing. I believe blocks are the closest thing to that at this time.

Ada

Hi Ada,

I believe that Ketamine infusions could become an integral part of remission of RSD/CRPS in the US as it has become in Australia where it has been widely used as a treatment since the mid 90's.
It is hard to assess it's efficacy in a country which is still not using it to it's potential.
I will quote some statistics from Australia which are available for anyone who wishes to check them which say that in a control group there was complete relief for 76%, partial relief for 18% and no relief for 6%.
To me these are impressive results from a drug that has little in the way of side effects if used in a controlled, supervised system.The half life is quite short with the drug being excreted very quickly by our bodies so sustained hallucinations are very unlikely unless the level is too high and not being regulated to patient tolerance.
I attend a pain clinic which gives regular Ketamine Infusions for 5-7 days every 6 months , sometimes sooner if required to top up and whilst there have been just a handful of people who have been "cured" as in having no pain, there are several who find they can live a very acceptable existance with remarkably reduced pain. At 3 years 33% of patients remained pain free.
To me any time with less or reduced pain is a bonus. To be able to fall asleep and stay asleep for hours rather than minutes is something I always look forward to.
I haven't been cured as such but have now lost contact with many who have who no longer need to attend our clinic because they have been.

As a nurse we have been using Ketamine as an anaesthetic drug for over 30 years. It is still the anaesthetic of choice for many patients who need anaesthetising for short periods of time as it has a lower incidence of respiratory suppression and depression and there are few side effects after.

..Unfortunately the illicit use of Ketamine is around with some people liking the disassociative feeling they get. Somewhat similar to an "out of body" experience but this is a short lived experience unless your hit can be backed up with another .
I have had a general anaesthetic with Ketamine too and experienced what is known as the "k hole" and whilst it is a wild ride there is certainly nothing pleasant or euphoric about it.

I would love this treatment in combination with blocks, mirror and graded motor imagery to be available worldwide and for all the doctors of the world to be knowledgable enough to diagnose this condition and immediately refer people onto those Pain teams which can manage their pain.

Wishing you well
Love Taylla:hug:

Hi Tayla,
 

Those are high statistics.

You are right. We do need Drs. that could follow a protocol of several different things to help a person get into remission. I have had ketamine injections, lidocaine and mericaine also. My PCP used the protocol of blocks, triggerpoint injections, PT and hot water therapy. When I first started fighting my RSD and Fibro I would do anything to get it under control. It was a major struggle but we found if we followed a protocol and stuck with it, then we did better. We just didn't give up.

Why is the US not using it like they are where you live? What are the reasons. I most likely have read why at one time or another but I can't keep anything in my head for long.

I think the one of the main things in dealing with RSD is finding a Dr. that is willing to be in it for the long haul and knows enough about it to try and get it into remission. There aren't a lot of them that do even in Pain Management. They give up after awhile if the case is too hard, also the patient gets frustrated and gives up after awhile. It sure isn't an overnight thing to get it into remission.

Ada

situation fixed with the PM 's Debbie and other's - sorry :)
now bear in mind - whatever one's drug of choice , in certain circles, that drug does not have to be obtained through legal channels(doctors) if that is not the way you want to do it - money can buy "high end connections " too -
and now I am done on the topic
Again - Good times are ahead for us !!!!!!!!!

Peace
GnP