new member w/full body RSD going to germany looking for fellow sufferers
 

Hello,
My name is carrie, i'm 30 yrs old with agressive full body rsd. my 1st symptom started on 7/20/2007. it is spreading very fast. don't recall injurying myself. so we dont know exaclty how or why it started. looking to meet others with similar conditions. got fired from my job of over 4 yrs. and am now on state temp disability. i'm on the waiting list to go to germany to be put in an induced 5 day coma to be given a drug called katamine that will reset my sympathitic nervouse system, or something like that. still everything is so new to me. i'm being treated be a few docs. the doc that runs the germany treatment program in in philly is dr. schwartsman. i'm lucky to only live 30 minutes from his office in s. jersey. sorry about the typing, i can only use my right hand it this time.

thanks, hope to hear from people soon,

carrie

hi Carrie,
Welcome-
Have they given you any time line or how long the list wait might be?
Nice to meet you.

Welcome
 

Welcome Carrie,

How awful that we meet this way, but I am glad you found this forum. I have been using it since last winter and there are a lot of caring and helpful people here.

You don't need to apologize for typing. Most of us are in the same boat and have many days where hunt-and-peck is the best we can get away with. We all understand.

I don't know anything about Ketamine, but there are people using this forum that have some experience. I am sure you will hear from some of them.

Good to meet you,

Mike :grouphug:

hello
 

Hi Carrie
Welcome to NT, I too have full body RSD though mine came from a car running over my heel as I exited the back seat(:eek:). I think that is so great you get the opportunity to get the full ketamine treatment in Germany, what kind/length of a list do they have? waiting time.

hugz and again welcome,
Sandra

Hi Carrie

Welcome! I'm Frogga and I live in the Uk. I'm 21 and have severe full body RSD. I take oral ketamine 3 times a day but am not going for the coma treatment - I am having the trial for a baclofen pump instead. I have had RSD for 5 years and have also developed generalised dystonia which really sucks!

Anyway thought I'd say hi. Have you tried any of the outpatient ketamine treatments?

Love

Frogga xxxxx

Hello there Carrie, and WELCOME! Nice to meet you, though I am sorry it has to be under these circumstances. I hope that you can find the help you need in these pages.

I also have severe full body RSD, and I am looking into getting Ketamine infusions...

I sent you a PM (top right hand corner of your page), I hope you get it.

Don't worry about the typing- I go through times where I only type with one hand and that's the way it has to be sometimes. We all understand! :hug:

Hang in there!!

Pain free hugs :hug: :hug:

Hi Carrie,

So sorry you have the need to be here but there is much to be said for your early diagnosis.
Dr S. certainly is very knowledgable re Ketamine and I was wondering if he would contemplate you having the lower dose sub coma treatment in the time you wait for your coma therapy in Germany?
Because you are so newly diagnosed the sub coma dose maybe all that is needed to reset your sympathetic action.
I am in Australia and have Ketamine a few times a year but we do not do coma therapy as just like the US and UK it has not been accepted by our FDA.
Wishing you heaps of luck
Tayla:hug:

still waiting for a time frame, hope to have an idea some time next week.

my insurance does not cover the low dose. it would cost the me more money to have a 5 day low dose IV in the states than it would for me to go to germany for the 5 day coma.
carrie

QUOTE=tayla4me;154321]Hi Carrie,

So sorry you have the need to be here but there is much to be said for your early diagnosis.
Dr S. certainly is very knowledgable re Ketamine and I was wondering if he would contemplate you having the lower dose sub coma treatment in the time you wait for your coma therapy in Germany?
Because you are so newly diagnosed the sub coma dose maybe all that is needed to reset your sympathetic action.
I am in Australia and have Ketamine a few times a year but we do not do coma therapy as just like the US and UK it has not been accepted by our FDA.
Wishing you heaps of luck
Tayla:hug:[/QUOTE]

Welcome
 

Hi Carrie,
Welcome to our group although like all the others I am sorry to meet you under these circumstances.
Gentle thoughts are with you. I too, am from Australia…..unfortunately Tayla & I haven’t met…the place is just so very big.
From your web name (I think that’s what it’s called) do I detect you are a cat lover?

My wife & I live with 2 Maine Coons and 4 Ragdolls. My wife shows them and we were going to do this together when we were first screened by the raggy breeder just before CRPS…..AAAARGH! They never go outside but are my primary carers. Oops! My wife does get to go outside and is the hugest help for me.

I think the cats keep me sane & going physically and mentally they are certainly great mates whom I love dearly. When I have those days stuck in bed they ever so gently share the bed without hurting me. They are such well mannered little folk who take the good with the bad without question.

I do hope you get that Ketamine treatment soon & that it is very helpful.
Taylas’ idea of the awake treatment with Ketamine is a good one. This can, for some, give heaps of relief too. A pain team of the caliber of Doc S is a great starting point & sooo close. That’s fantastic!!!!

Best regards for a result and again welcome.
Auberon

Re: Ketamine
 

Hi Carrie,

Welcome! So sorry to here about your current situation with this horrible, disorder. But I just come home Friday 9/28/07 from a 5 day ketamine infusion, my third.

My main Dr. works closely with Dr. S, a matter of fact I will be doing all my boosters with him starting in 2 weeks. I never post but if you would like some private information you can private message me.

Nobody can tell you what it's like until you have gone through it. I do see it as the post effective treatment we have, for now. Note: I have not done the coma procedure.

Try to stay as stress free as possible and I hope you have some pain free days ahead.

Ann

hi carrie sorry to meet under such poor conditions
 

i have only had a couple of 2-3 day experiences with ketamine and it was always under sub coma conditions. honestly i think the coma route is the way to go, i have had some very random experiences. it is most definetly one of those meds that seems to vary when it comes to individual reactions however if you are under for the whole time you might not notice.
i am not a full body patient at this time, i have from time to time struggled with the effects of a total system shut down.
i currently have 2 spinal cord stims so if you are looking for basic info or info regarding other options.
that is awsome that your docs caught it so quickly, i was first dx in the early 90's and noone was to sure about the whole it is rsd not just all your head argument.

ketamine
 

Carrie

Hi there= if you go to the tab "search this forum" and type in ketamine you will probalby find tons of info!

Keep us posted on your when u know your date

Debbie

Hi Carrie

Peace