Spreading like wildfire :(
 

Hi all,

My name's Tom and I'm 23 years old and from the UK. I got diagnosed with CRPS II in April 2012. Since April it's spread from my left toe, to left foot, right toe (strange right) right foot, up both my legs and into my right hand and arm. I can't come to terms with such a rapid debilitating turn, though I'm trying blocks and have been enrolled into Dr Andeas Goebel's immuglobilin treatment in February 2013. He's an expert in CRPS so let's just say I have high hopes!

To those of you fellow rsd'ers that have had a spread, how quickly did it take to get to where you are now? Do you still have hope for new or future treatment? I know cancer is a terrible disease, but I wish there was more funding for crps as it's not fatal but just as painful. We have no way out!

Dr Goebels is one of 7 UK specialists I have spoken to, I'm soory but not one of them is an expert, none had ever heard of American and Dutch Papers I spoke about even though some of them are over 10 years old, some still recommend the use of Guanethedine blocks although 8 studies have been carried out saying they are useless against RSD, the first was in 1993. One was going to send me to Germany for the 5 day Ketamine coma at least 18 months after it was banned there, and the UK has never done a trial on a cure for this condition even thugh Isreal have done 3 and South Korea 2.
Last specialist I saw 2 weeks back said I only care what goes on in the UK and that has been the attitude of all but one of them.
As far as RSD/CRPS is concerned we are a third world country.

I don't think the ketamine coma has been banned in germany. I've seen people post about being referred there from america. And I think dr goebel is an expert compared to most doctors! It seems that you've been having bad experiences so far then?

Tom,

It has taken mine 3 years to start spreading. Now it is in both feet. But the original foot (right) is far worse then left. I believe I also have some internal stuff going on, but not sure if it is medication related or rsd.

I am sorry to hear about your spread so fast, some are slow some are fast. I can argue against or for your dr.'s there in the UK, all I can say is that I have heard of people going to Mexico for Ketamine coma.

Tom - Mine is from venipuncture and electrical injury and spread to all 4 limbs within weeks - very rapidly. What type blocks are they doing and how are they going? Best/

I have been dealing with it for a year now in my right hand to shoulder, undiagnosed until this last june, and in the last 2 months, i messed my foot up and it spread to both legs, and back and neck. my left arm has pain and tremors, but nothing like the other 3 limbs. I have been going doctor to doctor, and i dont think any of them are experts. I think people who deal with this have a lot more knowledge...just my opinion.

i hope that you get relief, and your doctor will have the knowledge to help you, stop the beast from spreading..

I think you're right about us knowing more. My GP just laughs when I mention any information found from the Internet. They're stuck in the dark ages or maybe stuck up their own asses..

I'm really sorry to hear of your spread. Have you had ketamine ?

Keep the faith young one.
 

Good morning my young friend,
My name is Andrea and i am in the 21st year of RSD. I live in Daytona Fl. There was no time frame for me as far as the RSD spreading. It was almost 5 years before I knew it took my left arm after a right ankle injury in 1991.
I was stirring pasta, I'll never forget it. As I turned the spoon I felt a burn and stab in that hand, kinda like a bullet just hit me. I put down the spoon and fell to my knees begging God to let me be wrong. Time and pain went on and in 1997 I was deemed System by Dr. Hoosmand of Vero Beach.
My Thermogram showed no legs or arms it had gone that far with the hypothermia effects.

I know there are allot of new treatments out there, so keep the faith and hang on for your miracle. PLEASE keep me posted as to how this treatment works for you. Will keep you in my prayers.
As for hope with the medical system and RSD...I prefer alternative care. I have been pocked, cut, stabbed, pricked TOO many times with no permanant results of releif. The more invasive the worse the result for me.

One thing no one will ever do again is a nerve conduction test on me. That is an inhumain test and especially on an RSD body. I would rather get struck by lightening.
Beings my injury was a work related issue I had to endure every torture test the the medical profession had to offer. The last was 3 days at Wake Forest Medical with 10 hours each day filled with tests that proved only that I did not have MS, MD, Palsey,P.A.D issues Yadyada....never, oh yes it is RSD.

So dear friend, keep the faith, but do hold sight of reality. Your mental state has allot to do with this monster too. It will mess with you but you can stay ahead of it if you are on guard for it coming at you like a tornado.
Be good to YOu, and find happy people that keep you up and laughing.
Those laughter endorphins are magic when you use them.

As for RSD not being as important as cancer, or a lost limb, etc...
The discrimination can really make you nuts if you let it. You have to make yourself NO. 1 and hold tight to the truth you live with. God knows how we suffer and it will be by His grace that we are healed. Keep the Faith.
God bless you and keepyou strong. Peace& LUV, Andrea:cool:

Well put and true from living in The Dark Age.
 

Hello, got a good giggle out of your reply. Unfortunatley,You are right.
I developed RSD in the Dark Ages. 1991.

I am 21 years with RSD. If I had a dollar for every doctor I had met during this time that had never even heard of RSD, I could go but a new Corvette.
I had one tell me to my face in his office,"OH, I must have slept thru that class." I had to just walk out, I was going to beat him in the head with my canes if I didn't.
Yeah, my title after doing the home work and representing myself in court after the 12th year, 16 years of workers comp doctors torure was "Confrontational Client". Every hearing deposition alike, same heading.
I had come too far and worked too hard to sit down. They all knew they were blowing smoke..they needed the paycheck so drag this on...
It got real old.
You have to learn the game to play the game and it is just that, A Game.
(usually) It took me 16 years, one of the longest running cases in Pa. but I won. The Judge shook my hand and wished me well. God bless him.
Hey sorry for running on here, but my coffee kicked in and it is so great finding you folks. I have been too poor the last couple years to have my computer on line. I have some catching up to do.

As far as the Katemine? They did have some 100% sucess rates in the mid 60's using LSD as treatment. Same deal, new drug that the system can make more money with. Naturally the FDA could not have anyone using LSD.!

Have a blessed and easy day. Peace & LUV, Andrea.:cool:




e.

i am uninsured/self pay,i cant afford ketamine and spent the last year going through doctors like hot cakes.. hoping this new one will be better..