Sticky Blood-Hughes Syndrome Support
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AWOL - but back

Hi all, so sorry for not posting for some time - between personal issues, going on holiday (yes had health problems :( and) being admitted to hospital the day after my return I have had a wee bit on my plate - however here I am safe and .. hmm reasonably well - I have come back, with a symptom that started while I was on holiday ..... how can I look at a beetroot and call it a pineapple?? well that seems to be my new party piece, Saturday I announced to all friends I had the sausages .... which were in fact strawberries - I now go to the par cark, etc etc - now when I say these things I know they are wrong, but don't seem able to correct them. Also I can be told a bit of information 3 or 4 times but cannot retain it even for a nano second, but other times I am ok - my doc has referred me for a brain scan, and also informed me, I have lupus, yet I didn't know this .... not sure yet what this all means. She said maybe it is better now, that I be seen by rheumy team too, as I am under lung, heart, blood teams and need a central point .... I wonder is it lupus as my hematologist seems to think is to blame for this new brain block or APS or both, or have I had a bleed/clot - While in hospital I had a bad nasal bleed lasting some 6 hours (maybe connected) also the stupid hospital stopped my warfarin as my INR was high, although I warned them my INR would plummet which it did - from 5 down to 2 - my usual being 3 - 4 but on the upper end of that. Anyhow a BIG hello to everyone, and hope to be replying, commenting and generally taking a more active part again.

smiles as always :)


5 Replies

Oh wow I have done this in the past! It went away thinkfully but you know it can be a sign of a stroke, TIA or something else.

Def get scanned and see what is causing it and if symptoms get worse def go to A&E


Sorry to hear this but welcome back. Keep us all informed. :-)


Hi sorry you are having such an awful time. I must say I am always worse on returning from holiday. Flying effects me or ?maybe the stress or change in the weather hope it starts improving for you soon Karen xx


I haven't been out of the country on holiday for 4 years now as I always came back ill....and pardon the pun...but I was sick of it!....I have however booked up for my 40th next year and I am so looking forward to it, this will be our first "child" free holiday....the thought of being away in some lovely sun being looked after is so good, but at the back of my head I have a little nag of a devil worrying me!.....but what I wanted to say was about the hospital staff taking you off I am by no means qualified in anyway shape or form, but my they not have a brain about them???...the one thing I know is my warfarin ....on one of the many occasions of a hospital stay they kept on taking blood ( I know this is routine!) but when I asked why so much so often....oooh erm...we think you might have a " blood disorder" we are checking you twice a day....checking what said I ?'s something called your INR .....erm said little bold me....I'm on lifelong warfarin....I have history.... That's why I have been admitted! I attend the anti coag clinic EVERY week, and have done for over 10's the punch line.....oh we didn't know this!!! .....I just find it incredible that your clinical team don't know...or should I say care for your history...they just swoop in do their job..and leave!......sooorrrrrreeeee...rant over ! X


Hi Lesley

Good to have you back, what an awful time you've been having, holidays sometimes take some recovery. Hospitals eh? Docs etc, struggling to get the message, slow but sure,

With the neuro symtoms my inr being low makes the speech problems so much worse, my docs so far dismiss this as the meds. Mmmm!!!

I hope you're improving hon.

Take care gentle hugs love Sheena xxxxx :-) :-) :-)


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