I'M OVERWHELMED - Reflex Sympathetic Dystrophy Message Board

laura40 · 08-01-2003, 09:29 PM

I'M TRULEY OVERWHELMED HERE,READING EVERYONES STORIES.
ALL ALONG I HAVE FELT SO ALL ALONE IN ALL OF THIS,FEELING AS THOUGH NOONE WAS UNDERSTANDING WHERE WE WERE COMING FROM...NOW I CAN TRULEY SAY WE ARE NOT CRAZY.AFTER A WHILE WHEN YOUR DR'S CANNOT GIVE YOU DIRECT ANSWERS AS TO WHAT IS GOING ON WITHIN YOU,YOU
ACTUALLY START RETHINKING THINGS AND CONSIDER YOURSELF CRAZY.I WANT TO THANK EACH OF YOU FOR THE RESPONSES AND KIND WORDS OF WISDOM..IT TRULY MEANS ALOT.I'M SORRY TO SAY THAT MOST OF THE TREATMENT OFFERED OUT THERE,MY HUSBAND IS ALERGIC TO.HE HAD A LOWER LUMBAR SYMP.BLOCK DONE 1 1/2 YRS.AGO,AND ALL WAS GOING WELL AS WE WERE COMING HOME,ENJOYING THE BEAUTIFUL DAY WE WERE HAVING HERE IN THE SOUTH,AND THEN ALL OF THE SUDDEN I LOOKED OVER AT HIM AND HE SAID HE FELT SICK..I PULLED OVER AND REALIZED HE WAS IN TROUBLE,FORTUNETLY I WAS W/IN MINUTES FROM A LOCAL HOSPITAL..ON THE WAY HE HAD AN AWFUL SEIZURE..I BELEIVE IT WAS FROM OVER MEDICATIONS..YOU HAVE TO WATCH OUT FOR SOME OF THESE NUEROLOGIST..THEY LIKE TO BE PILL PUSHERS...YOU KNOW THEY GET KICKBACKS FROM THESE DRUGS?JOHN IS ALLERGIC TO ALMOST EVERYTHING..INCLUDING THE NUERONTIN.HE CAN ONLY TOLERATE 200 -400 MLG.A DAY IF THAT.OUR LIST GOES ON AND ON...WE ARE CURRENTLY LOOKING FOR AN EXPERT IN RSD.I DON'T CARE HOW FAR I HAVE TO GO,I NEED ANSWERS..WE BOTH FEEL SURE THAT IF HE DOES'NT GET THE CORRECT TREATMENT HE'S GOING TO BE IN TROUBLE..
ANYONE WITH SUGGESTIONS?FEEL FREE TO EMAIL ME...THANK YOU LAURA

sharon1030 · 08-01-2003, 09:38 PM

Hi Laura and welcome. I'm glad you find this board so helpful. I'm sorry that you and your husband are going through this, but he's lucky to have you in his life. I've had RSD for 17 years and I know how hard it can be. I also know how hard it can be to find a good doctor. I had a great doctor in New York City and then he upped and went to California and I was so upset. I knew I would never find another doc like him and I haven't so far. If you want to travel to CA, I would give you his name. Good luck and again, welcome.

Sharon

riceneuroni · 08-02-2003, 03:15 AM

Welcome again, Laura. You're right, this is a wonderful place. Never give up trying to find the reason for the RSD. Finding a doctor who will help you with this is even harder than finding someone who will help try to relieve the pain. Inquiring about finding a cause I was told more than once, "We don't do that." Huh!?

If you can find the underlying reason the nerves are inflamed you might be able to treat it and the nerves can return to normal. Just keep doing the research and looking for those who will help. Don't bother with those who won't.

You're a very special person to be so involved in your husband's pain. I think many spouses get overwhelmed with the new responsibilities as well as the loss.

KYIMP

mimi7 · 08-02-2003, 08:42 AM

Laura,
There are many drugs that can be harmful to us. I am a product of some. Here's a list to go check out............ [url="http://www.care4dystonia.org/drug.htm"]http://www.care4dystonia.org/drug.htm[/url]
Hugs,
mimi