Hmmm....let's see....I saw about 15 doctors over the course of about 5 years dealing with TOS and RSD. I KNEW there was soemthing wrong, but since the tests they were running on me all came back normal (cuz they were running the wrong tests) they said I was nuts - it was psychological. The only doctor who DID believe me was my MD...the problem was, he wasn't familiar with treating TOS/RSD. My PT believed me, also, but she wasn't curing me...and had to do PT based on what the doctor who referred me to her told her to treat me for...so she couldnt really treat me for TOS. So, I went from doctor to doctor, who then referred me to specialist after specialist...many of who tried to find "proof" that I had MS, so they'd send me for more MRI's of my brain, trying to find proof of it, cuz htey said my symptoms acted much like MS.

I was on all different types of medications, trying to see which ones worked. I was in PT for neck issues cuz they thought if they could work on my neck, my arm pain/numbness would go away. I went to a (psyiatrist?????) who would just adjust my neck and back every two weeks. He didn't believe in pain meds, though, so I was in horrid pain constantly. I called him one day when I couldn't even get out of bed, I hurt so bad and was crying my eyes out. I couldnt even get in to see him. He said if I hurt that bad, go to the ER.

Believe it or not, I even had a FELLOW TOS/RSD-er call me a "doctor shopper" (or in other words, drug seeker perhaps????) cuz I've been to so many doctors trying to get someone to diagnose me. You want to talk about feeling like crap? Try having someone who is going thru the same thing you are, telling you that you are a doctor shopper! The only reason I went to so many doctors is because I was following the DOCTORS INSTRUCTIONS! They're the ones who were sending me to specialists! Md would send me to a neuro...neuro would send me to a thoracic surgeon....thoracic surgeon would send me to a vascular surgeon...vascular surgeon back to my md cuz they couldn't help me....md would be so convinced it was TOS and not knowing who I should be treated by, he'd send me to a DIFFERENT neuro....who'd start the cycle over agan (of course, starting with more MRI's to check for MS!). And 3 rounds of PT cuz of course, every time a doctor wants to send you to PT, and you tell them you've already been, they said, "Oh, but MY therapist is the BEST!" so they make you go again. AGGGHHHH!!!!

Then the merry go round of med's. I think I've been on almost every single one you can imagine. How do you think I got to the patch! You have to go thru almost every pain med, up the ladder of them til you reach a max, until you get the patch.

Hon...you aren't alone. This is such a stupid disease, and doctors are so confused about it that many times they don't know what the heck they'r looking at. Then when someone elde finally confirms it's what you have, then they suddenly feel for you, and suddenly they know what it is and you aren't nuts anymore. But it's like they didn't wnat to be the ones to diagnose you! Ad so many weird things can happen with RSD that not many doctors can answer our qustions.

My doc told me not to reseach on the intrnet with UNRELIABLE SITES. To stick to TRUSTWORTHY ones...like those of the mayo clinic or the NIMH or whatever it is. Not to just accept things as written in stone unless it's from a reputable site. Maybe that's wht your doctor meant????

Don't worry. We know what you're going thru...so vent here. We know you aren't crazy, aren't doctr shopping, and aren't an addict either. Ad we'll believe you no matter what you say, even when others won't.