I have made an attempt to write this about 4 times now. I just don't know where to begin other than to say, I am truly disheartened in the midst of receiving the poorest level of care in my attempt to get a final diagnosis of GCA. Yesterday was suppose to be a very important milestone and trip to my ENT who pre-diagnosed me with GCA. (Why I ended up with an ENT...let's just say, I was on my 4th PCP who had no idea what was going on!) My blood tests came back negative and I attribute that to either (a) I'm in the low percentage of those whose blood work is negative but still have GCA or (b) It was because I was on steroids. Well, she threw the towel in, stating that she didn't know what was going on. I told her that I want an immediate referral for a Rheumy and further reminded her that my eye pain and blurry vision had worsened and that I have every symptom in the book that screams I have GCA. She immediately called an Ophthalmologist downstairs and I spent the next 3 hours with this joker. I won't go into all of the details but after he spent 15 minutes yelling at me because I should have been on a higher and consistent dose of steroids. (By the way...my husband phoned the ENT 3 times asking for a refill for my steroids because she was going on vacation. We ran out of meds and my husband ended up getting a low dose steroid pack from work.) This Dr. was furious that my husband who was not an MD provided this medication. By this point, steam was shooting out of my ears and I almost walked out but I was extremely concerned with my eye pain and blurry vision. Long story short, the tendon behind my right eye was inflamed (shocker!) and then (no kidding) he sat there for 5 minutes tapping on his piece of paper wondering if he should take me off the steroids for a week OR prescribe a high dose. This was after he informed me that yes, he believes I have GCA! I was speechless and it probably was a good thing because I really wanted to use the F-Bomb! I couldn't believe I was hearing these words. I walked out of the office in tears, no prescription, canceled my next appointment with this ENT and now I will be calling this Rheumy to get in ASAP. I'm extremely depressed knowing that I spent 4 hours of my time with two MD's who produced NO results. I can't imagine what this is going to cost me...my eyesight and/or the draining of my bank account?! It's time to jump back on the saddle and make some important phone calls. I hope there are better days in my future...this sucks!