23 year old male here with head pain over temporal artery for 8 months now without a confirmed diagnosis or treatment plan. My temporal artery biopsy was completely negative without any inflammation, giant cells or panarteritis. My ESR and CRP are normal. The section of artery removed for the biopsy was tender to touch before it was excised.
I have been on 60 mg prednisone per day for 5 days now and feel amazing compared to how I felt one week ago. The muscle stiffness and fatigue and head pain have largely subsided and I have hope and energy and personality again. one section of artery still feels somewhat tender (but much less so compared to a week ago) to touch and when I tilt my head to the right side.
Has anyone ever heard of someone being treated for GCA with a negative biopsy and negative blood work, where the doctor only monitors symptoms and response to prednisone?
This is exactly the situation I am in and it's frustrating to find a doctor that can help me for long term therapy without any scans or tests or biopsies showing that there is a problem. I am considering having artery ligation surgery to cut the artery to stop the pain if no doctor wants to prescribe me prednisone for longer than a week. Has anyone ever considered this ligation surgery for long term pain relief purposes only?
Could this be a form of constant migraine? I do not have nausea or sensitivity to light or sound. I also have no visual disturbances at the moment. I want to try to convince a doctor that my symptoms are real and not made up (why would I be going through all of this if I was not in seriously horrible pain)?