Quote:
Originally Posted by AintSoBad
Tammi,
I too, am sorry to hear about your daughter's dx.
I have had rsd for 26 years.
Cam you tell us what caused it? Was there an accident, or injury?
Anyway, we currently have two mom's with their daughter's, and also a sweet young lady who has this monster.
WE got some real good news today.
I think, I hope that these ladies will be in touch with you!
You can go private if you wish.
After 26 years, I know it took 7 years for my dx. Too long.
I'm too far gone, and live on pain killers (methadone, and a cocktail of others).
Get your daughter to a Neurologist that is KNOWLEDGEABLE with RSD! He'll take it from there! (When I say a Neuro who's Knowledgable, I mean exactly that! Where do you live? Near a city? A good hospital? A university hospital? That would be great, get to the "Cheif of Neurology"!
Don't Wait!
TIME is now of the essence!
(What type of doctor(s) have dx'd her? Have they sent her for any treatment?
What are they saying?
Please! You have a short window of time to "cure" her now! TAke it by the horns, and do it!
The Cleveland clinic, Philly, There are many good doctors, thank God, when I got this, there were hardly any!
Read the current threads, and PM or write to those "Mom's" who have just gotten some, or are about to take steps for their daughters!
Take a page from their "book"!!!
As I said, Time is Critical!
Even if you must pull her from school for a short while!
Do what you must, so that you daughter doesn't live a life, like I am!
PM me, if you wish....
love and Prayerss..
Pete
asb
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Hi Tammi and welcome to neurotalk, though sad about your daughter. I am 61 and have had this for 15 years, now full body and internally. I wasn't diagnosed for 4 years and then was misdiagnosed. Knew RA was wrong, so went to a ortho hand Dr. diagnosed me in 1 minute, nuclear med test confirmed and got into pt next day, ordered a tens unit for hand. I came back home and found a neuro and ortho hand doc who also had experience with RSD and his pt's had experience with rsd. When I went full body, I needed a psychiatrist who also was a neurologist and pharmacologist. Really happy to find a wonderful, caring doc who skilled at rsd.
i agree with Pete, I'd fly to whereever to get a good rsd doc. Her best chance of remission is now, I actually went into remission twice, following pt. during that first 4 years, not knowing what I had. This is a rough disorder, which makes it impossible for some to go to school, others can. I am mobile, with just one hand partially crippled-got into pt too late. You can't go back, so get the best help that you can get now. I'm going for HBOT after first of the year.My Dr. built two clinics that each have one. Please ask anything you want, and we will help as we can. Please know we understand and care about you and your daughter. Take care, loretta with soft hugs