Struggling to get diagnosis of GCA

I am a 47 yo female who has been having symptoms for almost 2 years. First onset was after taking nap and awakening with severe pain all over, flu-like but worse. It gradually went away but left with severe neck pain and fatigue. I didn't seek attention for a week because I couldn't take fatigue. At that time the only thing abnormal was a CRP of 56. Too many episodes to mention in between but after being told so many things by different docs, I gave up. But when I did go, I always went a week after symptoms started but CRP was always elevated. I have told them my vision literally changed overnight but opthalmologist didn't see anything. I am still losing vision and for 2 weeks I felt my head was being pumped up and have tender spots all over top of head, ears are ringging, bad vision (worse in right eye), severe shoulder and hip pain, and extreme exhaustion on a lot of days. I am just waiting on a severe flare any day now. I need input on whether anyone else has these symptoms and if so, did you too have a normal ESR. I just have tried to play tough and not go to the ER, but I know I will have to this time to make sure the ESR is not elevated, because it does go back to normal within 24 hours of peak. Any insight would be greatly appreciated

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  • What you are describing is really not typical of GCA - it doesn't seem to come in short lived episodes as you seem to have. You will also struggle to get it labelled as GCA because you will be perceived to be too young. You aren't - but many doctors are totally convinced that only over 50s develop it.

    CRP is regarded by many experts as more reliable than ESR - and that CRp does suggest there is something inflammatory going on. However - the ER is not the place to get it recognised and/or investigated. You need to see a rheumatologist. It is a rare disorder and I doubt trauma experts see much of it.

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