@carol75 . Hello Carol. You and your doctor are correct. Sometimes a patient might have negative temporal artery biopsies and still be correctly diagnosed with GCA.
When I had my biopsy, I had already lost most of the vision in my right eye. As the surgeon was performing the biopsy he exclaimed several times to his nurse assistant "Look how BIG it is!" (the swollen artery). He told me afterward that he knew I had GCA, without even getting the biopsy results.
I was shortly thereafter quickly admitted to hospital directly from the office of my Internal Medicine Specialist for three days of 1000 I.V. units of Prednisone per day, in an effort to save the vision in my other eye. Success!
Good luck to you. It's a tough journey and you're right to say you've never experienced anything like it before. Warmest wishes, Laurie ❤