Hello, about 8 years ago I had a bypass surgery of my intestinal arteries at the Cleveland Clinic. My doctors there had differing viewpoints on what I actually had that caused all this damage: hepatic artery, carotid arteries, superior mesenteric artery, celiac artery, and aneurysms in gastroduendenal artery. Some said FMD and other said a burned out Takayusus arteritis. It doesn't help when you can't get a definite diagnosis because the protocol is different for each type. I was sent home told to take daily baby aspirin and to to have a cta and ultrasounds of my carotids and mesenteric arteries every 1-2 years. Things have been stable with all that. Just went in May and got the all clear for two more years. Now 4 months later I am being told that I may have GCA. I have a biopsy scheduled for next week of my temporal artery. My crp is 16 and esr 44. I was having eye pain for a few days and some blurry vision a few weeks before that I didn't hone in on because I never suspected vasculitis. I thought sinus infection. Then I started having jaw pain. I chalked it up to my tmd. I went to the dr and she ordered blood work and while pressing on my temporal artery I winced from pain. She sent me to ER to get a catscan and bloodwork. Catscan was clear for any sinus infection or teeth problems. I am in shock that this may be happening again.
Just looking for support and to read about others' stories to help me understand that I'm not alone.
Thank you.