Hi all, I've been a lurked for some time and have found a lot of posts helpful. For over 3 years now I've been having lots of random symptoms, aches, pains, minor small joint swelling, chronic fatigue, b12 deficiency, hair loss, fluctuating weight, chillblains, ? Reynauds...the list is endless. Bloods after bloods and apart from one high esr (or crp, can't remember which, again another symptom, bad memory) and the b12 diagnosis nothing is showing up!!. Spring this year, 1st nice sunny day spent 20 mins in the garden, every bit of me that was Sun exposed was covered in a red, itchy angry rash, arms feet neck ears!! Horrible. OTC steroid cream wasn't touching it. 10 days later, I'm feeling terrible in general and bam, the worst cystitis. Went to go who referred me to dermatologist and rheumatologist.
Saw rheumatologist today, and after only 5 mins, without looking at the pics of the rash, or really taking any other history, and having oh looked at my finger nail beds, discharged me as my historic bloods were negative for lupus and so it deformed wasn't. My gp ( who has now left and was the only one who had ever actually taken the time to listen and realise there is something going on) said that she believed my symptoms may well be caused SLE. I thought today I may get some answers, but ended up sobbing in my car. Still waiting on rheumatologist appointment but am now worried whatever he writes in his notes will skew their opinion. He'd diagnosed (or rather undiagnosed me) before I'd entered the room... I just don't know what to think anymore, am I in fact going mad. Or is it possible to have lupus without positive blood tests? I always have the tests weeks after symptoms have died down. I have chronic cystitis/ bladder weakness too which is a real pain daily.
Sorry for the essay, needed to get today off my chest x