Re: RE: TO ALL MEMBERS......

[Guest guest]

HELLO EVERYONE, ITS AMEY. I KNOW I DONT POST ALOT. I USUALLY JUST ANSWER QUESTIONS IN A PERSONAL MATTER. BUT,,, THIS I COULD NOT HOLD BACK ANY LONGER...I WISH SOME PEOPLE WOULD PLEASE "STOP" CHASING FOR A CURE!! THERE IS "NONE"! GET IT THRU YOUR HEAD!! I AM NOT BEING MEAN I AM SIMPLY TELLING YOU THE TRUTH. AND I BELEIVE IN BEING HONEST.. I ALWAYS HAVE... HONESTY IS THE BEST POLICY..

Amey I agree on some of your opinions on wasting time and money on bogus cures. But if blocks had helped me I would of stuck with them just to relieve the pain. As for chasing for a cure I for one don't go chasing for one, but we can still hope, just the same as any cancer victim, diabetic or Alzheimer patient do.

So while I agree that all those tests are a waste of time. I know a couple that I have had were to rule out any other condition.

I know there is no cure at this time I am not going to say that a cure is impossible, I will continue to hope for a cure, but I know that right now there is none.

Lin

[Guest guest]

ITS ALL AN INDIDVIDUAL DECISION BUT EVERYONE PLEEEEEASE CONSIDER THE AFTER-EFFECTS OF THESE PROCEDURES.THIS IS JUST MY OPINION TOO AND I DON'T MEAN TO COME OFF AS NEGATIVE BUT JUST TRYING TO GET YOU TO SEE, JUST LIKE AMEY, THAT ALL THESE 'FIXES' AREN'T ALWAYS 'FIXES'...TANYA

,

The other day when Dr. Shwarztman and 2 patients of his that went through the 5 day coma I was excited not because of what was done but because RSD was even mentioned and when Diane Sawyer said to Dr now this is a real disease and not something people invent in their minds and he said that it most certainly is a disease, that was a victory a small one at that. I guess maybe I see things a little differently because here in Oregon I have been told by 2 doctor's offices that they don't believe in this disease, I really hope that they were watching. I can honestly say that I have yet to meet someone who has heard of this disease other than my one friend whose sister has it

Also if you read the article he even admitted that you could go through all that and it still not work. Now that would be the ultimate disappointment.

So I for one aren't planning a trip to Germany any time soon.

take care and thank you for concern,

Lin

[Guest guest]

Amey,

While I agree with you in some parts of your note, I do not agree that people

should give up hope for a " cure " . No, right now there isn't a cure. There may

be someday. It's how I live my RSD life. If I thought I was going to have to

deal with this kind of pain for the next 40+ years, I don't know if I could bear

it. We must have hope, if not for a cure, then at the very least, for a

treatment that works.

They are making strides.. ok, maybe baby steps.. but they are working on it.

The Ketamine treatment, although controversial, helps people live normal lives

again. Blocks DO help some people. We all have to look at our own treatments,

and if they are NOT working, don't have procedures just because your Dr. wants

you to. We all have the right to say NO to procedures if we've given it a fair

chance and it hasn't worked.

I don't have blocks, etc. done anymore. I know they don't help me. My Dr.

respects that. If he comes up with something NEW to try - I'm THERE! I have to

use every opportunity to help me live life with RSD.

Me, I'm NOT giving up hope. It's what keeps me going.

Hugs,

Jo

[Guest guest]

Lin,

I agree with you. I have MS and even though there is no cure, I can tell you that every day they are getting closer and closer. Just a week ago the FDA came out with a new medication that they think will help tremendously!!!! I cannot wait to check with my neurologist about it. I feel the same way about RSD! Even though there is no cure right now, everyday they are working towards one. It is much more common today than it was ten years ago! I believe in time there will be much better treatments for RSD just like there is for MS now!!! Amey I know how bad you have RSD, but you cannot give up hope, nor can you expect others to give up! Take Care all and Best Wishes and LOL!!!!

Dawn wrote:

HELLO EVERYONE, ITS AMEY. I KNOW I DONT POST ALOT. I USUALLY JUST ANSWER QUESTIONS IN A PERSONAL MATTER. BUT,,, THIS I COULD NOT HOLD BACK ANY LONGER...I WISH SOME PEOPLE WOULD PLEASE "STOP" CHASING FOR A CURE!! THERE IS "NONE"! GET IT THRU YOUR HEAD!! I AM NOT BEING MEAN I AM SIMPLY TELLING YOU THE TRUTH. AND I BELEIVE IN BEING HONEST.. I ALWAYS HAVE... HONESTY IS THE BEST POLICY..

Amey I agree on some of your opinions on wasting time and money on bogus cures. But if blocks had helped me I would of stuck with them just to relieve the pain. As for chasing for a cure I for one don't go chasing for one, but we can still hope, just the same as any cancer victim, diabetic or Alzheimer patient do.

So while I agree that all those tests are a waste of time. I know a couple that I have had were to rule out any other condition.

I know there is no cure at this time I am not going to say that a cure is impossible, I will continue to hope for a cure, but I know that right now there is none.

Lin