Hello,

I am new here and would like to ask a question: what were your initial symptoms and how were you diagnosed? The reason I ask is just for personal clarification, I guess. I have widespread neuropathic issues, and for several years now have literally been told by more than one neurologist "I know you have SOMETHING, I just don't know what. All we can hope is for it to get worse and point itself in a clearer direction". For the past six months or so, I've had what seem to be textbook symptoms of TOS, yet every doctor I've brought it up with only replies with, "Do you know how RARE that is?!?". My thought has always been, "not nearly as rare as the Meningioma type I had removed two years ago...so don't talk to me about "rare"..."

Anyway, if anyone would be willing to share some info, perhaps it could either convince me that my symptoms aren't that "textbook", or that I should work harder at finding a doctor willing to earn their money...

My very first symptom was waking up with my hands fallen asleep.

At the top of the TOS forum there is a sticky thread with doctors by state. Look up your state or surrounding states for a specialist.

Thank you.

My first symptom was chest pain on the effected side. Shortly followed by a toothache-type pain down the arm. My orthopedist had initially suspected TOS, then sent me to Johns Hopkins where it was confirmed by physical exam, scalene block and Doppler.

Some older threads -
top 5 symptoms -
http://neurotalk.psychcentral.com/sh...123#post184123

Larger list of symptoms thread -
http://neurotalk.psychcentral.com/thread5618-2.html

First symptoms (my son): scapula area pain, thumb and hand pain, arm pain. What are your symptoms?