My story is a long one, like a lot on here. Many many years ago (when in my twenties) I had the butterfly rash and a dermatologist said at the time it was Lupus but couldn't be 'definite'. Creams etc sorted it and I went on my merry way with no other symptoms (I'd never heard of lupus and just thought it was exscema of which I've had on and off for years along with asthma).
Fast forward about ten years and boom I have chronic urticaria, swelling, crushing fatigue and pain. GP said it was a virus. A consultant A&E specialist (I was rushed in when my mouth started to swell) said 'lupus'. I was sent to an immunologist but this was six months later and after some fantastic immunosuppresant drugs and steroids I was okay. The Immunologist suggested lupus but again, didn't bother to test - he said sometimes there are false positives and sometimes false negatives. So off I went again.
Now it's another ten years later and I feel dreadful again. No rash this time (although urticaria crops up occasionally and always has done - (I've always assumed it was 'just me being odd and ultra-sensitive), but I ache everywhere, my eyes are blurred, I'm dizzy and feel drunk.
I've had a ton of blood tests which came up with vitamin D deficiency (I've been on megadoses for this) and MRIs - all clear. Lumbar puncture test came up with antibodies in the spinal fluid but otherwise clear (the neurologist thought at first it was MS). I suggested lupus to the neurologist who said 'no' with absolutely no argument - although three other consultants have suggested it may be. There has been no explanation as to why there are antibodies in my spinal fluid - is this normal?
Now what? I'm at the end of my tether. My vitamin D levels are back to normal yet I feel like I've run a marathon every day - just six months ago I was fit and well. I can't help thinking this is a lupus flare but no-one believes me.
Sorry for long post but I feel I need to get this off my chest and feel at home here. (I've read some of the posts about symptoms and nodded 'yes yes yes got that had that...).