Hi there,

Just wanted to say that I hear you. I feel like I have been going around and around in circles, had every test possible, and no one is helping me. It is so frustrating, and disheartening.

The vast majority of my TOS symptoms are vascular in nature. I finally had a vascular ultrasound yesterday morning, but I'm not sure what the results are yet.

My CT scan with contrast, xrays, EMG and nerve conduction study all came back normal. The only thing that has been helpful thus far was the vascular study, which did indicate loss of blood flow to my extremities. My PCP, the physiatrist, neurologist and one vascular surgeon were clueless. Now I'm seeing the best of the best in New England, without much help. He prescribed Botox and PT - neither intervention has changed my circumstances.

I have asked if there is a risk of clotting in my case, but no one has indicated that possibility. I definitely see what you are saying though - if my blood stops flowing in some movements, I would think it is getting "clogged" somewhere? Who knows, though.

Jmaxweg - You bring up a great point. I think I will try to advocate for a angiogram next time I see the specialist. A new test might bring more information.