Sticky Blood-Hughes Syndrome Support

About me and APS & thank goodness for opticians!!

Hi i have posted a few times but have not really blog about myself. My name is kathy i live in bristol i am 47 married have a hubby andy, one daughter, rachel, a budgie jimmy and more recently a puppy rosie... hence rosie & Jim ;-)

My diagnosis in 1990 did get published world wide & i owe my life to the hospital where i was working and still work as a nurse... then my illness created alot of interest because at first i was a mystery and back then little was known about APS so i guess i am lucky i was working amongst neurosurgeons & neurologist but even 21 yrs on i am amazed at the lack of knowledge out there and negligence that goes on despite information accessible...

background info joint aches and pains as a child, poor vision in left eye ? lazy eye suffered with migraines.. whiplash 2 way in 1987 again affected the left side mainly of my neck... raised intracranial symptoms post whiplash and whilst on the pill... false positive syphylis detected on donating blood age 18... missed abortion at 18 weeks had d&c 20 weeks as didnt self abort...pregnant again in 1989 problems with headaches, swallowing discomfort left side of neck uncontrollable vomiting 6 weeks pregnant... diagnosis was that of benign raised intracranial pressure opening pressure of lumbar puncture was 54cm vision in both eyes rapid deteriation but joint consult of neurologist and surgeons due to deteriation in condition meant new diagnosis of sagital sinus thrombosis that responded to being heparnised and steriods. vision improved no need for a shunt.. phew!!!

Placental abruptions at 30 weeks birth of rachel 2lb 10oz but healthy due to steriods so didnt need ventilation... slow recovery but once off steriods lost 2 stone enjoying being a mum... then warfarin got stopped with the steriods headaches back vision deteriated this time carotid angiogram confirmed further blood clots one behind left eye...

it was on the second admission a neurologist, registrar, took a keen interest and came up with the diagnosis of antiphospholipid syndrome so long term warfarin, sterilised at 26 to prevent further pregnancies was told nearly died and this would be a sensible thing to do to take away a major risk factor - pregnancy

My 30's were uneventful fatigue issues some memory probs but nothing major to stop me returning to a very busy ward my inrs were stable odd blip but mainly stayed above 2.5-3.5 on 5mg.

early 40's weight gain less active due to more profound fatigue issues also noticed concentration and memory worse at times did see a rheumatologist then but choose to lose weight no longer worked early after lates and was part time never increased hours just did extra shifts if i felt up to it... fatigue more of a problem then flu at xmas 2010 led me to learning more about the condition for myself as it was evident the medical profession ie my new GP's lacked knowledge and started treating me as though i was neurotic!!! saw rheumatologist in march got diagnosed with fibromyalgia i know i shouldnt rant but sadly my GP said i was depressed and didnt listen to what i was saying.. the heamatologist didnt have the same interest re my inrs it seemed and despite speaking to one in person my inr was allowed to drop to 1.4 i felt dreadful!! swallowing probs again on left, pressure feeling and tender over my nose and headaches poor concentration and articulation... being a nurse was seen as a irritant by some staff at my doctors...

this leads me onto to now... doing phased return at work... letter from second review in aug states keep inr at 2.5 minimum my inr dropped to 1.9 14 days ago have had pain behind left eye now for 14 days... saw locum GP got stronger pain killers told i dont have glaucoma i told him my ACL antibodies very high at present and rheumys advice re inr. He didnt even look into my left eye so yesterday pain behind eye persist so got cancellation app at boots optician.. was due eye test but pain prompted visit thank goodness for opticians... looks like i probably have had further clots behing left eye so he will write to GP for me to have a referral he understood about fibromyalgia too and said it seems there is a link between these conditions!!!

so for anyone else out there who has visual head involvement see an optician they are so knowledgable and pick up many health issues especially related to the brain ;-)

sorry its a long blog i do get carried away xxx

4 Replies

Hi Kathy thank you for sharing your story it is always good to hear that its not just the Doc who need to be informed on this condition and thank you for sharing.


hi kathy..glad to meet APS was found by my ophthalmologist...every doctor i went to said MS or "all in my head" eye doctor asked if he could do a few blood tests and sure enough in the APS category i came up off to rhumey doctor i went ..this was in 1996 or 1998..i can't remember which one..but anyway it was through his intelligence that i was saved from a major health problem...



Although I was already on the route to diagnosis, my optician also found evidence behind my eyes and ruled out eyesight as total cause of headaches.

I`ve also been very fortunate to find a dentist who is knowledgable about autoimmune conditions and there effects on mouth, gums and teeth. So it seems some of our medical profession are getting their.

Glad you getting help and hopefully feeling better, Take care, Gentle hugs love Jessielou xxxxxxx


Thanks guys for your messages ;-) especially re dentist that has prompted me to get an appointment!! must be 6 yrs since i have been - its just one of those things going so regularly for inr checks i need a season ticket at my surgery!! with work and 'our' shared friend fatigue its something i keep meaning to do... thanks for all the words of support... i had a fab day monday worked minimal headache and managed to walk rosie and visit a friend was out for two hours!! but the same pattern re occurs work one day... next day pain back in eye and nausea, fatigued so poor rosie only got a small walk yesterday and today back to work... now work mon wed fri to give me a recovery day as my body just cant handle early starts!! if only i could start at 10am not 7am i think i would manage better ;-) but hey ho ive learnt to enjoy and take each day as it comes and feel blessed that i am as well as i am love to all

kathy xxx...


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