Originally Posted by keep smilin

Jeanie~

You shot me girl..thankgoodness you did the dirty work..You are a true friend and so funny.. I totally agree with everything you stated, Jeanie and Ada..As I find myself pondering over my next step ... I know my limits and have always said I will not place every penny I/we have saved to be poured into the "possibility" of a chance for me to have a defined time of pain "relief"... I understand clearly your point and yes..we are realing with relentless pain daily for our lives so we are very volunable..My recent visit with Dr. S, I say was a great benefit as I needed verification of my stage of RSD and what to expect for my future... as my PM Dr. here could not do that for me... I find that I am a detail girl..no sugar coating for this chick....give me the facts is exactly what Dr. S did...I work in research, well I did until Dec. 09... for 25 yrs. for a big momma pharmaceutical co... humm and Iam only 29 yrs. old (kidding) how does that happen?? ..So medicine and the world around medical stuff is my bag. I was happy to meet someone so knowledgeable and on his/our game... the next step will be my call but I can not justify going after that carrot if it is not approved by my insurance.. so they lost me as far as a player... in the game of..this is what you need so get the cash and come back...seems I put a price tag on my chance to walk again and ultimately watch myself be consumed by my RSD but to me.. I see no other way as $$$ is big for the Ketamine .. Maybe it was not going to prove to be a positive route for me to take anyway...in the mean time, I know where I stand and thats good enough for now. We all basically in the same boat..it just depends who wants to take over paddling eachday..

SO Jeanie..how many bullets did it take to drop the ole' lady??

Hugz, Kathy

Originally Posted by Wilbyfree

Awwww, it was just a bb gun, I just wanted to get your attention. I am so grateful that Dr. S, was able to put you at peace with your (instincts). Your health and overall wellbeing is priceless, you cannot put a tag on that and WE haven't. The doctors and insurance companies have. This illness drains of many more things than money. However, when you com
e across doctors, and we all have who recognise our desperation for pain relief, they will and do take advantage of you. Now, if this was a sure hit or even a high possibilty for a cure for you, I would tell you to go full throttle but in actuality, you are a guinea pig to their advantage, it is a win win for the doctors, and a possible lose lose for you. If they cured people with this, they would be all over the news broadcasting their good deed that they have found a cure, and if this cured everyone of us thereafter, your money would be well spent. It is hard to beleive that the insurance companies are declining something like this, especially if we are looking at a lifetime of remission, not a cure just remission would be nice. You are a wonderful friend, and friends don't let friends paddle drunk...so I will take over for the day!!! LOL

Jeanie

Originally Posted by Wilbyfree

Awwww, it was just a bb gun, I just wanted to get your attention. I am so grateful that Dr. S, was able to put you at peace with your (instincts). Your health and overall wellbeing is priceless, you cannot put a tag on that and WE haven't. The doctors and insurance companies have. This illness drains of many more things than money. However, when you come across doctors, and we all have who recognise our desperation for pain relief, they will and do take advantage of you. Now, if this was a sure hit or even a high possibilty for a cure for you, I would tell you to go full throttle but in actuality, you are a guinea pig to their advantage, it is a win win for the doctors, and a possible lose lose for you. If they cured people with this, they would be all over the news broadcasting their good deed that they have found a cure, and if this cured everyone of us thereafter, your money would be well spent. It is hard to beleive that the insurance companies are declining something like this, especially if we are looking at a lifetime of remission, not a cure just remission would be nice. You are a wonderful friend, and friends don't let friends paddle drunk...so I will take over for the day!!! LOL

Jeanie

Originally Posted by SandyRI

Have either of you had a chance to meet other RSDers in person that have been successfully treated with ketamine? I have.....and that is why I have tried so hard to get it. I know people who feel their lives have been literally saved by the infusions.

We have a support group in my area that meets once a month. The leader of the RI RSD Foundation started receiving ketamine in Boston at Beth Israel on April 16, 2009. (The BI's program has since been closed to new patients.) Her story is very compelling.

I won't ever give up trying to get better. I HATE being sick. My injury is a WC injury. I want to go back to work ASAP. I've tried everything else.

XOXOX Sandy

Originally Posted by SandyRI

Don't mean to jump in here out of turn - but ketamine has become an "accepted" treatment for RSD. That's what Getson's office tells me, anyway. I understand that Dr. S. is really strong with insurance companies. Has he or his office done any work on your behalf? Has there been any impact on your case because of the 2 double blind studies that were done last year by him and in The Netherlands?

How cool that you in the pharma industry. That means that you really understand this stuff better than the average joe...

Interestingly enough, the women to whom I referred to in my previous posting, who has been getting ketamine infusions for a year now in Boston at the Beth Israel, was approved for the treatments by United Healthcare. She is only liable for her deductible. Because she got her life back I am really happy for her - she is really nice and she and husband deserve it (heck - we ALL do!!!). But I often wonder how it could be that it was so easy for her while I'm being tortured for approval over the same treatments by the same health care company....ugghhhh...

Take care Kathy, xoxoxo Sandy

Originally Posted by keep smilin

Snady..
I love visiting with ya..Yes, I have been knee deep in the pharmaceutical trenches for 25 yrs...and loved it... got the lingo and medical background..sadly my RSD pulled me away from it.. I did crawl with my RSD there for 3 years but could not do it anymore...

Dr. S's office said they can only say it is used "off label" as far as they are concerned and the ins. company can't get past that... as their interuptation is saying then it as experimental then... I have been working with Dr. S's in getting documentation together for my conf. with United health Care based, MVP ins. actually..and Dr. S's told me they have never known any private ins. to approve 5 the day sleep, thats where I lost my gas in my tank... still yet to be refilled!!

I am tickled for anyone who can go forward..I hope and pray that others will benefit for life!! And I am equally sorry that you, my dear are being tortured also... hang in there..You are a fighter ..we'll see this thru!!!

Hugz, K

Originally Posted by Wilbyfree

Hi KS, and yes I am still paddling...up the river. Okay, so now to my understanding, they are curing people or remission with this treatment?? And you have the same insurance as this lady that Sandy knows, then why can't you use her as an example to get your approval. Or for that matter, why can't Dr. S, show significant documentation of the pts that he has used this treatment on and prove at least remission? This is what upsets me, the fact that the doctor is not backing you on this because he has no evidence and yet he wants your money! KS...if you really want this treatment and you believe it will work for you it probably will. You have to find someone or some type of evidence that this is not experimental and indeed has given people back thier life. Your Dr. should be able to provide this type of documentation, of course following the HIPPA laws, that this is working for people. I say, fight...search the internet for remission or cure with the use of this treatment, call the Dr. office and ask if they can help provide you with documentation, there has to be some help for you here. Don't give up, I know you want this treatment and you deserve to have it!!!! I will pray for you and believe that you are going to be approved for this treatment. In the meantime, just sit back and enjoy the ride...I got it.

God Bless all

Jeanie