Originally Posted by Rachiebabygirl

Hello I was wondering if anyone who's been diagnosed with TOS happened to have a venogram that ended up negative? I have been having severe pain/swelling in my neck/shoulders, that presents itself with supraclavicular swelling, pain that radiates down my arms,extreme fatigue/weakness of my arms especially when I raise them above my head,cold/blue extremities (but no swelling of the arms or legs), and just overall extreme fatigue. This started 8-10 years ago. This happens when I am under ANY stress, physical or mental,when I get excited and happy or sad. Every Dr I have ever been to (and I've been to quite a few!) Has been clueless about what could be the cause of this and I have had multiple thyroid tests,uptake, CT scans (for thyroid and supraclavicular swelling) MRI of the pituitary,and countless others. All of which have disappointingly come back negative. The only positive test I have ever had was for Primary Sjogrens and that was diagnosed just a few months ago. I just had the venogram today and it too came out negative. All my research points to me having TOS, which leads me back to my question: Has this ever happened to anyone else that was diagnosed with TOS? Sorry for giving you basically my life's story I'm just trying to put all the facts out there I am at my wits end and am really looking for some help. Thank you in advance for your help!