I was diagnosed last week with Thoracic Outlet Syndrome; however, my doctor tells me that all my other symptoms cannot be caused by TOS. These include leg numbness, tingling, twitching legs, abdomen, and feet (very small...only I notice). Also, in a vascular test, it was noticed that my feet were completely "flat" as far as getting blood to them...there is NO blood getting to my toes! I even get these lesions on my feet after car trips (they burn!). The pain is not only in my arms/hands, but even in weird places like my pelvis!
When this whole crazy mess began, MS was one of the first things I was tested for, and the MRI was negative, and MRI of cervical spine was normal.
It is obvious I have a vascular problem and need help, quickly! I saw some information posted about Dr. Ahn and his work with TOS and the jugular vein. Does anyone have his contact info? I am willing to travel to see him.
Another eerie symptom I have are these AWFUL red, painful eyes...then after reading more of your posts I saw that Simon Lewis, author of Rise and Shine also had this (he had TOS). He had a bilateral rib removal, which I am prepared to have if it means I can have my life back.
So, yes, I have TOS, but do I also have CCSVI? How would I get tested for this?
I am anxious to get back to my life as this has been going on since September (right after I had a baby). Also, I'm a teacher and would like some type of resolution before the new school year.
Any help or insight is appreciated. If you aren't comfortable posting Dr. Ahn's information, please send a private message. Thank you all.