Hi, Firstly I would like to apologise for posting and disappearing last time after you were all so lovely. I have had lots of confusion with results so I didn't want to be wasting time if it wasn't actually Hughes. I was wrong and I should have stuck around and listened!
So, back in November I had my first positive lupus anticoagulant test and was called to the doctors for a repeat. This test was contaminated so had to be repeated Christmas Eve. I was told it was negative when I rung the GPs receptionist (BIG mistake) I've been really unwell so following advice here I asked for a repeat. Also told it was negative by reception.
I've been getting progressively more poorly and I have seen an already made appointment with a brain surgeon for a vascular issue. A large loop causing very loud pulsatile tinnitus. I told her that I have been trying to get a new diagnosis for my"fibromyalgia" as I have never believed that this is what I have. I've recently also started having to walk with a stick as it's a real struggle. My home is being fitted with rails, shower stools and various other disabled aids in the coming weeks.
Anyway last week I feel worse just so very very tired I couldn't get up. Then my feet swell up to twice their normal size, quickly followed by my hands. Trouble being I am on holiday in Spain. Saw a medic who prescribed frusemide. Then comes the rash. Dark red spots on my legs in circles and a lovely big bruise. We bring our flight forward as I feel uncomfortable and ill anyway and we were just worrying.
Still with me?! So I got back yesterday and go straight to the GP as I have rung ahead for my Mum to get me an appointment. It turns out that all 3 of the tests have been positive. He didn't know why the reception had told me otherwise. He had printed out the latest results and I asked for it to take away. It's all a bit confusing to be honest. He kept saying I have lupus. When I know that lupus anticoagulant means APS. Which is what is on the form. So anyway urgent referral back to the same Rheumatologist that diagnosed me with fibromyalgia. And re-confirmed that diagnosis when I asked to be retested in October. (tested for inflammation as a whole)
I'm worried I will be waiting for a while as I have been given nothing to thin my blood and I am all swollen up and basically worried I might have a stroke! Attached pictures of swelling and rash...