Just spent ages writing my story then whoosh it disappeared.
So I am bullet pointing main facts.
Had rheumatologist appt today to discuss GCA/PMR.
PMR symptoms in July but ESR not showing much inflammation so continued with my pain filled life all Summer. My symptoms seemed classic of PMR. Nothing would help the pain.
Back to GP. Had another blood test and started on 20 mg steroids, warned about GCA, and realised had symptoms so dose increased and symptoms improved. Inflammatory levels up.
Rheumatologist yesterday said I couldn't have GCA because of levels and symptoms.
Yes I had PMR but it didn't start until SEPTEMBER because that's when my levels rose. I asked about prior symptoms, he said he must have been something else!. All down hill from there. It seems no raise levels no PMR. Even though Symptoms responded so well to pred.
I just became a blubbering wreck and couldn't fight my corner, he gave my a tapering regime, a second opinion if I wanted.I know he deals with this condition daily. But I have read on here that 1-5 people have a nil result on blood test but still have PMR.
The result is I feel very lonely, unheard, weak, keep crying, can't sleep, don't know what to do.
I have a history of autoimmune MS, Undifferentiated Connective tissue disease, auto immune hepatitis. Has anyone had similar experience or negative Esr.