Sticky Blood-Hughes Syndrome Support
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Silly me

Hi im new to all this I only got told 3 weeks ago I have ApS, so bare with me please, and before my diagnosis I would have put it down to my clumsy nature and the fact that I just haven't had enough sleep (my husband recommends a good 14 hours for me as it also means im less grumpy,) but for the last week I have had a mild migrane and my eye lid has been twitching, yesterday I forgot my date of birth, and when I went to get petrol I couldn't remember my pin, i walked into the wall and a desk at work yesterday too (they all think im extremely clumsy no matter how many time i tell them that chairs and tables and some times walls are all bullies and don't like me!) now this morning I fall down the stairs, I'm not on any anticoagulant nor do i see a heamo or ruehomotologist (sorry for spellings I'm dyslexic) l have been diagonsed by proff quenby after 3 misscarrages

11 Replies

Hi hon

Welcome and glad you found us, so sorry to hear of your losses and the health problems you've been having.

Your symptoms are very familiar to lots of us on here. Aps is so exhausting and symptoms seem so varied. Learning to listen to our bodies and resting is so important, I know on this I should take my own advice, it's so hard to accept that though!

I'm glad you have medical team sorted and there are treatments that may help with fatigue etc. the Hughes syndrome foundation is a great source of info on

Hope you feeling ok today

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


Hi there. As your new to all this and having migraines and forgetfulness, I would recomend speaking to your doctor about possibly getting a brain scan done. Without wanting to scare you, this is how I started out minus the miscarriages. I was having migraines and loosing my memory and like you just been generally clumsy. It took for me to be on deaths door to find out I had 3 bloodclots on the brain. I would hate this to be the case for anyone else. A scan would maybe show nothing up for you, but it's better to be safe than sorry!!! I hope you get sorted quickly, and remember there is always someone on here that is going through rough times too, and it does help to talk!! Big hugs, take care x x


Hi Clumsy....maybe you can change that name now that you know you are Woolly or Foggy and not just clumsy! On a light note, I remember the relief I felt on diagnosis, to know that there was a reason for all the weird things I did and the way I was feeling. You must be pleased to know that you are NOT just a victim of spiteful furniture and nasty walls - which sounds like an episode of Doctor Who!!

Push for anti-coagulation treatment, and you will start to feel a little clearer, and good luck in getting used to this 'new kind of normal' !

Larraine x


Hello there and welcome to our friendly group. So happy that you have found us and that you have a good team around you and that diagnosed you so well.

Is there any chance you could ask for a referral back to them now for another check up given your latest symptoms? It sounds like they should be reviewed and perhaps look at the possibility of taking some sort of anticoagulant to help. Then perhaps you can start getting your own back with some of that furniture!!

Seriously though when you start falling down stairs it's time to look at things again.

Please let us know how you get on or if you need any further help with this :-)



Welcome to this wonderful and friendly group.

I agree with what the others have said it is time to get referred to a specialist in APS. Where are you in the world? If you are in the UK then St.Thomas' Hospital in London (NHS) or Professor Hughes at The London Lupus Centre (Private Consultation) would be the places to aim to go to.

It certainly sounds like some anticoagulation would benefit you a lot.

Best wishes.




Sorry you have APS and feel the need to visit us. But welcome! Join the club of us wall and chair victims! Definitely sounds to me like time for treatment.

I had 2successful pregnancies but was diagnosed after a series of mini strokes. I never walked into walls, but MRIs revealed the biggest leison in my visual cortex. It's much better now, but I still have, and probably always will, my new friend The Psychodelic Gummy Worm. He lives in the bottom middle of my field of vision. He has dimmed now and I go months without seeing him. But if my INR dips too low he returns.

During the weeks before and after my initial treatment though he was a part of everything I saw. The brain tries to correct for obvious visual anomalies and present your conscious self with a scene that makes sense --it will stitch in, so to speak, what the brain likely judges to be in that visual hole.( why does my brain think color changing, Psychodelic gummy worms are likely to exist?). I still saw stuff, just sometimes what I described seeing was a little . . . Odd. Like the time I was driving down a busy street and turned to my daughter and asked, " did I just see someone in a Big Bird suit driving a motorcycle past us with one foot crouching on his motorcycle seat and the other leg stuck out behind?". " no Mom. I think you'd better let me drive. It was a motorcycle, but it was an plain looking driver with a scarf,who obviously hasn't heard how Isadora Duncan died."

I tried to reassure her that even though I misinterpret the object I still see and yield to those misidentified objects. Whether it was Big Bird or Isadora Duncan I still saw the vehicle. But she could not be convinced. It was years before she rode in a car with me again.

But many years of check ups with my eye doc confirms the " gummy worm area" has shrunk. And now I even find him a useful friend as his shenanigans warn me my INR is too low.


This reminded me of me! I used to suffer a lot with a twitching eyelid, it drove me to distraction! I walked into furniture, walked into walls (broke the same toe on the same foot three times walking into the same damn wall). I couldn't remember my signature once in the supermarket (the days before PIN numbers). Once I started on my meds the difference was incredible. I agree too that the diagnosis is wonderful because it gives you something to work with, the not knowing is more scarey.


I am and always have been clumsy. Since I could walk, I've been clumsy. Yet, my dream was to become a ballerina with grace and elegance. (Ain't it always the way?) I increased the clumsiness losing peripheral vision in one eye as a result of my stroke (among other losses), so I take corners short. I am constantly bruised on the shoulder as I just can't see. Then to increase my challenges I have recently been diagnosed with cataracts in both eyes and degeneration of sight in one eye x 20% already. (Gina, my family decided you should name your cataracts Winkin', Blinkin and then you can Nod. You gave us a barrel of yuk-yuks at the dinner table. Many thanks for your sence of humor.) I also have a left eyelid that drops for no reason. The stroke left me with that as well. There was a doll put out in the 1950's that was 3 feet tall. As big as a 3 year old and she looked completely real. Her name was Patty PlayPal. Her lifelike eyes used to suddenly drop as you tipped her head back and forth. That's what I look like occasionally and always when it is incovenient. God does have a sence of humor!


I'm off to the gp tomorrow, I hate going and complaining about headaches feel such a fraud, but as long as i don't fall over on my way im sure i will be fine, but as its holiday time of year its locum galore at gp surgery so don't know how useful this trip may be


Good luck. Let us know how it goes.



Well locum looked like a 12 year old boy and prescribed me some migraine tablets, I don't know what to do, I surpose I could take them and see if they go away,in the mean time I will be looking out for chairs, tables, walls and anything else that just jumps out and trips me up


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