My biopsy came back negative but I was told by surgeon they most always do...yours didn't I wish mine was positive because now I have no proof I have this my dr feels I do

@jeep2004, I am sorry for what you have had to go through. Your rheumatologist sounds callous, and lazy. Good that you are looking for another doctor.
In the 1990s, my mother-in-law, who was in her 80s, and always vibrant, came down with a mysterious malady that knocked her flat. She had a headache, jaw pain when eating, night sweats, and general malaise. Her PCP sent her to an internist who took no tests, told her it was a virus she had to wait out, and sent her home. Long story short, I consulted with a friend, an infectious disease specialist, and sent him a detailed list of my m-i-l's symptoms. He guessed it was either temporal arteritis, AIDS, or a malagnancy. Through him, we got a referral to an excellent internist who ordered the biopsy. She was positive for GCA. At the time, my m-i-l was ailing, many close to her thought that it was "all in her head."
Some 40 years later, I was also diagnosed with GCA. To get the diagnosis, I consulted with my physician friend, sent him my lab work, etc. and he told me what tests to ask my PCP to order. When I told my PCP we suspected GCA, he laughed and said if I had it, I'd be blind. Although he later called to apologize, I couldn't overlook his arrogance and changed physicians.
I wish that my m-i-l was still around so we could commiserate.
In the book "Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide, Kate Gilbert makes the point that some doctors have no interest in PMR and GCA because they're usually diseases of the "elderly."
You are quite right about having to advocate and push in certain situations to at least be taken seriously.
Happily, after a year and a half, I'm off prednisone and symptom free. I wish you the best. Don't lose heart or your willingness to fight for yourself! I hope you find a caring, competent and conscientious physician who can give you proper treatment.

Wow. I also just went through all the GCA tests. Biopsy came back negative and Rheumatologist says it is not definitive, but I have been on Pred for over a year now. At the ER I was put on 60 mg Pred as a precaution. That was Jan 21. Rheumy has started weaning to 50 already. I only dropped it to 55 mg. as I want to ensure that I notice ANY symptoms returning. Opthamologist said no significant change in eyesight, except for a wee bit of growth in cataracts. So grateful for this. Also was diagnosed by my dentist yesterday, with actute TMJ presenting with extreme pressure in the head, i.e. between the ears with deafness in the left and tinnitus and also tinnitus in the right ear, jaws cracking and difficulty swallowing. He is recommending a bite plane to get jaw back in alignment. TMJ was not a huge issue in past years, but suddenly reared it's ugly head around the same time as the ER visit, with the head pressure and hearing issues, which have not dissipated, even while on 60 mg. Pred. ER doc looked in my ears and said no infection and yet here we are with the pressure remaining. So I guess my question is: "Is it GCA or TMJ causing the jaw pain? There is a pain just above my forehead, when I lightly touch a spots along my eyebrows. It does not hurt to the touch, it's almost a referred pain from a nerve along the brow. Not in the temporal zone. Dentist says it is the muscle that supports the jaw. Surgeon says it could be a symptom of GCA. I am reluctantly weaning at this point, because the concensus from most Rheumatologists is "let's get to 1 mg." and those were her words the other day. I was at 14 mg. Pred. prior to ER visit. Does anyone really know anything about PMR/GCA or is it a "fake it until" scenario? Side note: I have also done something to lower back, hip and down the outside of my right leg. Referred for a CTScan (in Nova Scotia that maybe some time within the next 6-12 months. Maybe PMR related sciatica, but extremely limited in what I can do at this point. Rheumy says this is something the GP should assess - not her. GP is a quack-a-doo. Self advocate here.