[neverending]

HI,
I am new to this forum. My purpose for posting is to warn people against taking one specialist advice get another and possibly 3 if you can.
Over the last 5 years I have been through hell!
I live in Pa and saw a specialist not far from harrisburg he DX me with me with TOS but after the first couple visits he started to contadict himself not about the TOS but about other things I have witnesses my family was with me. One thing he was alway consistance about was that I was NOT surgical.
Since then I have ran the gamat of DRs locally some who have literally kicked me out of their office when I mentioned I was Dx with TOS saying there was no such thing.
I was forced to go off medications cold turkey for lack of anyone to refill them. I have been stuck in bed for weeks paralyzed with pain and headaches I wished myself dead.
A friend finally found me a DR that believed and understood TOS
and took me there what a kind, kind man Not only has he Dx me with TOS
but I have also developed RSD type 1 through out all this mess.
If anyone has RSD I am sure you can understand the kind of pain I was in and these DRs were turning me away.....refusing treatment.
My current Dr has encouraged me to see a surgeon at least to see and get his opinion if I am surgical so I am going out of this state to get the help this DR and I feel I need.
So my message to all of you is don't take one specialists advice as Gospel.... It is only his opinion after all. Technology is changing everyday.
Keep looking up.....
Neverending

[astern]

you are soooo right!

I hope your journey is on the right path now. What surgeon are you going to see? I had to travel from FL to Denver to get someone qualified enough to evaluate me.

[TraceyW]

Hi Neverending!.

Im also fairly new on this site - only found about a month ago. Everyone on here is so helpful and a lot more insightful than the dr's i have seen so far!.

I live in the UK and it seems there are even less dr's over here who understand/treat TOS.

Would just like to say a big thanks to everyone who has been replying to my threads the last few weeks!

Hope your all well

[finz]

Hi Neverending............

Sorry that you had to go through the same struggle so many of us have to in order to find a doctor who has a clue. It is frustrating to say the least

Welcome !

[thursday]

Thanks 4 sharing your story. It blows that you lacked proper care for so long. I really hope the medical trail you're on now is going to be successful. We're rootin for ya!!
There's another PA member on here too... I forget who right. But I hope yall find each other so you can swap stories!

[Koala77]

Hi Neverending. Welcome to NeuroTalk!