Sticky Blood-Hughes Syndrome Support

Ever feel like a fish with a 30 second memory?

Starting the journey to 're-diagnosis' with a new Dr in the UK

Ever feel like a fish with a 30 second memory?
Starting the journey to 're-diagnosis' with a new Dr in the UK

I can't help but to laugh and then immediately feel like crying when I start relating my current memory to that of the lovable "Dorry" character from the Disney film Finding Nemo.

I've found myself daunted by the prospect of having to start the APS diagnosis process all over again. I'm tried, drained and just don't know if I can 'be asked'.

Back in the US I was diagnosed with APS 7 years ago shortly after giving birth to my second child. What started out as weak knees causing me to fall quickly turned to full passout/blackout sessions. After 12 months of testing everything under the sun they still hadn't come to any conclusions. I had a wave of generousity (and financial strain) and decided to donate some of my eggs at a fertility clinic. In the process of finalising the tests they ran the wrong one... the one for mother's who can't have children... and thus was passed to a Specialist in Hemotology who went through the diganosis process. I was initialy on Coumadina and eventually tired down to just an aspirin a day... but man did I look like a leopard from all the bruising from the thin blood!

Two years after diagnosis I met my British husband and upon feeling that life was too short to waste I left my job, my family, everything... and move me and one of two children to the UK.

One of my first tasks was to get registered with a GP and make sure I had someone monitoring my APS. After 3 Dr visits pleading for a blood test, I finally got one. They weren't interested in looking at all the records I'd brought with me from my US Dr's, which seemed very disturbing.. The test to my shock and happiness, came back negative... so I went off the aspirin...

And for the last 5 years everything has, for the most part, felt fine. But in the last 4-6 months I've felt those symptoms creeping back again. As I type

- My two fingers are tingling... not to mention the wierd pain in my foot

- I walked into the door twice this morning already... (outch! another bruise!)

- I forgot to feed the cats dinner and breakfast (that's why they are following me around!)

- I remember having a conversation last night with my Mother in Law but can't remember the time I'm to pick her up Christmas Eve (have to call her back)

- I know I need to sit down and work on my Marketing Plan that I have been struggling to finish at work for the last few months... but can't seem to focus to save my life! SO frustraing...

So I've canned my current GP and found a new one, this one came recommended on the NHS site. I've had one new patient visit with the nurse and I must say she was lovely and has scheduled me with a barage of blood tests next week. But I know how long this process takes... and fear is overwhelming that before I'm put back on medicine I'm either going to lose my job or have TiA's again.

I can only hope that this time it won't take a year to diagnose.. that this time I actually have found a Dr that cares and will help me... a boss that will understand and be patient and not fire me... and a husband that will bear with my dreadful memory (I am listening to you I just don't always remember everything you say x).

Bring on the weekend..

9 Replies

Hi, I'm so sorry to hear about what you are going through, but I'm sure that we can all relate to you :(

Unfortunetly it is just something we will have....I usually get it at it's worse when my inr is low. I am on warfarin, & the docs agree with me that if I am at least 2.8 I am not so forgetful & clumbsy! I still am....but at a usual bearable level. But on the other side of the coin...if I go above an inr of 3.2...I quite sometimes get bladder infections & kidney infections !! :)

I know my family & friends are so use to me being clumsy, stuttering & getting my words & sentences muddled up! I often just laugh with them....but it still gets to me smetimes :(

I know how you are feeling plus I hope you get it stabilized soon.

Sue x


You really need to on the correct medication & right docs too.


It really concerns me that you have come off your aspirin. I have only recently been diagnosed with APS but had to go to London bridge Hospital and see Prof Hughes himself privately to get that. I am seronegative so all the blood tests come back negative but I had a stroke this year and a PE in 2006 I also had 3 miscarriages plus numerous other symptoms.

I went to a neurologist at the end of last year because all the symptoms were getting worse but because the blood test came back negative he just said it was probably to do with my Fibro. He did not check the CT scan himself and the radiologists report said it was normal. After my stroke the CT I had then showed two previous smaller strokes so we looked at the so called "normal" CT and found that they had those previous strokes on them. Had the neurologist checked the CT and seen them I could have been put on at least aspirin and it may have prevented the bigger stroke.

Even if your tests come back negative you must impress upon your new GP your history and personally although I am not medically trained would have thought you should be on at least aspirin again. I urge you to be seen as soon as possible or ask to be referred to St Thomas's in London which is the specialist Hospital for APS.


Yes, I also had to go the private route through London Bridge, my entire family including myself bullied over genuine illness, resulting in my children being sidelined with no sick notes, (despite being top of the class in every subject), with educational welfare chasing us, as if we had been bad parents - our son had a migraine lasting 15 months and 4 days causing black outs, dead legs and phonophobia and dizziness, and now our daughter has a milder version of it every day! I have had multiple clots in my legs.. and as I am seronegative, not taken particularly seriously same with all my other longstanding conditions, including hypothyroidism which probably goes back years and has showed up clearly in expensive and thorough private tests. The amount of money I have spent to get private help including the City of London MIgraine clinic all adds up. Also the persona non grata effect of the odd rogue medic giving appalling care and the long term effect of writing on notes... which is often wrong. Mary F


Good luck and hopefully you will find your new GP the one that ticks the boxes.




It is interesting to read the comments - I too have some memory, clumsiness, mixed word problems along with bruising, muscle & tendon pains/weakness. At times it is hard to know if they are attributable to APS or my undifferentiated connective tissue disease.

Thank You to those who share their stories and make others of us feel that we are not alone.

I am interested to know if there are other people in Canada - particularly the province of Ontario, that are dealing with these APS symptoms and physicians/clinics that have been helpful.


Hi there, wish you luck, the memory thing is a total nightmare isn't it. My mum is really understanding she describes it like a movie camera with no film in it. She says it's like I've started to "film" but as there's no actual film in the camera I might think I'm taking it all in but there's no record being kept so that's why I don't remember it. My husband, love him he's such an angel and has to do so much for me, finds it almost impossible to comprehend that I can't remember something I might have been talking about 10 minutes before. I find I can write things down much better than speak things so I keep notes and check lists (don't know if this will help you, especially at work).

Hope you have a cool yule

Love Sharon x


I had to laugh at the fish Dorry. I always compared myself to her. My memory is awful. There are also so many people that i forget to call and then they end up upset with me, not understandind that i can only do immediate tasks at hand. This disease is confusing and overwhelming to me, in addition to children, pets ahome, ajob and ever mounting bills! My favorite line is "but you dont look sick!"



mine is ' i got the concentration span of a gnat' and memory of a goldfish. Good are'nt we, but at least we can have a giggle and share. Higher inr helps me,

hope you well today.

Happy new year!!

Take care gentle hugs love sheena xxxxxxxx :-) :-) :-)


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