Originally Posted by starfish43

Well, I can't comment on other people's clots or lack thereof. I can only tell you about the one clot I had that led to my diagnosis (venous TOS). Mine was not painful so my only warning was that one of my hands turned bright red. It still gets a little red even though my clot resolved, but never as red as when I had the clot. I had no clue what was wrong with me, and I felt silly going to the ER but sure am glad I went. My two cents: It takes a while getting use to monitoring your body as needed without obsessing. I am still learning how to find the balance after many months. Be kind and gentle with yourself, and just know that our bodies have an amazing capacity to heal. The most dangerous time with TOS is the time period prior to diagnosis, in my opinion. At least once we're diagnosed, we are clued in that something is wrong, and can take positive actions. Yes clots can be dangerous but so can driving a car, riding a skateboard and cutting steak with a knife. That said, I've gone to doctors for my share of "false alarms" and thankfully now feeling less embarrassed about it. My friends who have major medical conditions understand it's important to monitor my condition, and yet also important to live without worry 24/7. So very tough to do, but it's getting better for me with practice and I look forward to the day when I will be getting appropriate treatment and won't have to be quite so careful.