Hi all,
After 5 years of going back and forth to rheumy with joint and muscle pain, loss of hair leading to patches of baldness and a discoid looking rash called jesners lymphocytic infiltrate and extreme fatigue and being told I am ana negative after three times was really disheartening.
It took my own gp to do specialised bloods which have shown up with lupus anticoagulant and smooth muscle antibodies even though I was ana negative, he also X-ray my hands which have shown to be riddled with osteoarthritis.
My uncle who also like myself suffered from shingles as child, then we both developed paroxysmal atrial fibrillation, him at 18 and me at 24. He was initially diagnosed with lupus but that later changed to an MS diagnosis.
It’s upset me that’s it’s all taken so long and the more I read there’s no much controversy around the ana test. If hadn’t been for my own gp finally sending away specialised bloods I will have just kept test negative for ana.
Has anyone had similar experience or words of advice? I’m new to all this and don’t know where to start x