My neck X-ray came back "normal" according to my neurologist.

Now he wants to refer me to a rheumatologist to be tested for RA, lupus, etc.

I still feel very strongly that it is TOS. Has anyone else been DX with TOS and had a normal X-ray? I know other factors can cause TOS including the scalene muscles that don't show up on just an X-ray.

I'm very frustrated and there are no specialists in Alabama for me to see to discuss TOS with. It seems like if a doctor is not a TOS specialist, they have no clue what they are talking about.

Any thoughts? Anyone have RA with their TOS? - I saw that RA can give a predisposition for TOS.

So frustrated and discouraged. Some days it feels like there's never going to be an end to the searching. This is why I lived in denial for so many years about my chronic pain and hand problems - it was easier to enjoy life and blatantly ignore what was wrong with my body than dive into the pit of uncertainty.

[end vent]

Yeah, TOS can't be tested for with an x-ray. You need something like a Doppler Ultrasound MRA, scalene blocks and provocative testing. I'm sorry you're having a rough go of it.

I had an x-ray that showed nothing, an ultrasound that showed nothing, a CT scan that showed a shadow and then a venogram and "Bam" there it was! My blood flow cut off like a kinked garden hose when I lift my arm! Get another opinion and another and another until they find it because you know your body better than anyone else!