Ok, now I am both confused and depressed after this visit.

First of all my doc has a new PA that see's pt's before he comes in. He is new and doesnt know me from adam!! (or eve..lol) He asked me all my history from the past 6 years with RSD, made me undress so he can see my legs and he proceded to touch them and see if would react to him touching... holy cow i was soo close from kickin him in the balls when he touched my foot!! he was sooo lucky that i had knee controll!! So it ****** my legs off and just made me want out more!! Then my doc comes in and says that there is nothing really left to do, other then the pain pump and i am still leary about it and so is he, he asked what meds I am on and I SWEAR to you that he said to give me Klonpin.... well my scipt the pa gave me was for clonodine hcl 0.1mg. I have been on the patches of this when i first had RSD and it did nothing but made me have hot flashes and fast heart beat. And of course when i relized this his office is closed... He wont give me anythng else besides this i guess.. I asked him about Ketamine and he said its not FDA approved yet and everyone out there must be on a clinical trial... Is this true?? He also confirmed that i have gone to full body RSD. The worst is in my lower extremities and the RSD is gettng to my hands and writs and elbows. I am running outta hope here and im not usually the one that does this. I love love my doc!! but yet if I konw that there are people out there getting pain meds and other stuff that he's not willing to try.. y stick with him?? I have seen him now for 6 years and i cant say anything bad about him other then he just wont give me pain meds and i dont want to ask him is it bc of the issue out there about docs giving out strong pain meds... i give up!! I need chocolate and a pepsi and I only have one of them in the house..lmao.

Thanks for letting me vent and if anyone can help.. i would love to hear it!! anything.. ...


Amber

Wow, sorry you had such a bad visit. This is exactly why im switching my neuro pm doctor. He has me see assistants who dont know to much in my opionion about rsd as they prescribe the meds. If im going to be treated with rsd im going to see the main doctor. From what i hear ketamine coma treatment the five day one is not fda approved in us. But i do know of some who are getting ketamine treatments via other methods? Ill look up some info i can find. Personally im not so sure about the ketamine.


JoJo

Hi Amber,
WOW, I think I would have been a bit upset myself. So, VENT AWAY GIRL, VENT AWAY!!

Has your doctor ever sent you to a "Pain Management" doctor? Has he discussed the possibility of having the Spinal Cord Stimulator or SCS?

I also have Full Body RSD, along with Fibromyalgia, MS, and Full Body Osteoporosis with high risk for fractures, and am going through the process now of setting up for the trial run with the SCS, and was told if that doesn't work, than all I could do would be the pain pump. So I was wondering if you tried it and didn't like it, or if that option was ever offered.

I am not sure about the Ketamine, but like you I have heard numerous others who are one it. I don't think all of them could be on clinical trials, but maybe so??

Well I hope you found enough chocolate and another pepsi, or had someone bring you some, and are feeeeeeeeeeeling a little bit better now.

Love, Peace & Blessings,
Marla

WOW, so sorry about that last post being so HUGE, it was not intended to be and I didn't proof it....guess I have learned a very valuable lesson on that one. My bad!!
But at least you can read it...........hahahahahahahahahaha

Love, Peace & Blessings,
Marla

Well MY STARS!!!!!!!!!! The first one was just stupidity on my part, the second was an
accident, so now this one better be smaller and it is a truly heart felt Apology!!!!
Crazy thing anyway!! hahahahaha

Love, Peace & Blessings,
Marla

I edited the font size for you Marla

usually size 4 is about the max without it going huge 1st post i took to 5, second to 4 FYI

That you so much Chemar, I so appreciate it.
Just color me stupid today. hahahahahhaha

Love, Peace & Blessings,
Marla

Ketamine is a legal anesthetic often used by doctors, but in low doses. A high-dosage ketamine coma, which Sutton experienced, has yet to receive a thumbs-up from the FDA.

Dr. Kirkpatrick said he tried to get the coma approved in the United States, but gave up after growing frustrated that the agency wanted more trials and information on the procedure. So he sought help from doctors in other countries to treat some of his patients who suffered from RSD. The treatment is also offered in Germany.

Kirkpatrick acknowledges that patients who undergo the ketamine coma may not wake up again. Some wonder if that's a risk worth taking.

"That's pretty risky, to put somebody to sleep for five days and suppress their reflexes," said Dr. Elliott Krane, a professor of anesthesiology and pediatrics at Stanford University's School of Medicine. "In the United States, that would require an intensive care unit."

Krane said that while a ketamine coma could work for some patients, getting FDA approval in the United States would be difficult.

"Anybody could do it (a ketamine coma) in the United States, if they wanted to," Krane said. "They could do it in their garage, I guess, but it wouldn't be a smart thing to do.

You would never get an American insurance company to pay for it because it's such a wacky idea.

"It's one of those things you can get away with 90 times. But on the 100th time, you're going to kill somebody."

HI guys,

I am feeling better!! double cheese burger always does it along with pepsi and choco!! lmao..

Marla,

I have 2 stim's implanted!!! I have a spinal cord stim that was implanted 2003 and I also have a peripheral nerve stim thats implanted in my RSD thigh and connected to my sciatic nerve and that was implnated in 2004 or 5.. cant remember with out going back and looking at my ID cards. They both stoped working about 5 mos into having the perm one put in. I had the SCS revised 2 times and my doc just said i was the 1% of the population thats nerves reroutes itself around the stim.. which makes the stim null and void.. my luck huh!! and the PNS just goes to the knee and not to the foot where the worst of the RSD is. Well now that its gone full body they wont work anyhow.. grrrrrr I have had RSD now for 6 years and have tried anything he was willing to do!! even botox!!! Im just tired of being in pain and not haveing any control over it and him not willing to give me stuff i obviously need!!


Amber

PS I needed to laugh thanks for all the opps!! thought i only did that kind of stuff!!

[COLOR=Purple][FONT=Georgia]I am so glad I was able to make you laugh....it sure was frustrating for me when I was doing it though. I was using the quick reply and thought the font needed to be a tad bigger.....well, it sure 'nuff was.....then the second time it had held those settings and did it again....I felt so stupid!! But I was cracking up all along the way as well. Thank God for Chemar, because if she wouldn't have resized it, you would still be reading the first post because each letter would have been a new web page all it's own....hahahahahaha

But wow Amber, you have been through the ringer haven't you!! I can totally understand why you want something to help ease up the pain levels but it sounds like you have the same kind of luck I have...the kind that if there is a slight chance of it happening to someone....you can better believe it will be me it happens to. I am so glad you are in that same group...I was getting tired of being the Chair person, Treasurer, Secretary, etc., heck, I haven't even named the group yet....hahahahahahaha. Don't mind me, I am just rambling along aren't I? hahahaha




So are you going to go through with the pain pump? I wonder how effective those are for us that are full body RSD.....could go either way like anything else huh?

Here's a Pepsi for you

Love, Peace & Blessings,
Marla