I have aps but unfortunately for me I have suffered multiple infarcs and a cva stroke and am and have been unable to work since late 2010, I am on warfarin and need to take a dose of 11-12 tablets a day with a range of 3-4. My balance is very poor-recently I got out of the back of a family members two seater car, twisted my back and landed on my left leg bent with my right leg splayed to the side, over the next few days I could not lift my left hip flex, a week on the snow came and a slipped very hard as my two legs came from underneath me and landed hard on my back within the next few hours I was screaming in agony my hip was so bad I could not move my left foot an inch without sheer agony, screaming and with no other alternative but to cry out in pain as a release I called an ambulance, arriving at A&E I was left in a corridor and nobody came I could not lie down nor could I sit I continued to scream, eventually a Doctor came and told me to stop crying as I have not shut up since I got their! an xray of my hips were done that showed no fracture and I was sent home with anti inflammortarys.........(finding out later he had put reason for admission depression and back ache!!) Within hours I was screaming hysterically and another ambulance was called-17 hours in A&E still no help and ignored eventually I asked for the Heamos to be called following admittance whilst each and every one of the nursing staff, senior doctors said they would google APS I just wanted to die. An ultrasound was performed that showed a 5x5cm heamatoma my right hip muscle and that I was bleeding internally (2 pint loss) my right leg and back were now black and blue. I was not transfused but the warfarin was reversed, every awful symptom of the APS returned with a vengenance....

WHAT DOES THIS TEACH ME? NOBODY REALLY CARES OR UNDERSTANDS. I shall never go back to A&E, which leaves me in a very very bad place.....

Sorry this is so long, I think the answer here is no matter how many experts we see nobody really understands APS or wants to- the sheer misery physically and mentally it leaves you feeling.

Thanks for listening, part two to come @ London, god blessx

14 Replies

  • Hi there you must report this, as this is totally unacceptable, report the hospital and go to your MP,and also alert the Care Quality Commission and do a very firm feed back on NHS Choices or Patient Opinion, no need to name the individual publicly, they will work that out, from your private letters. I am sorry you have had such a terrible time. Please let me know how this progresses. Which area are you in? You probably have told me, but brain only firing on half a cylinder today! You can do all of the above on line! Mary F x

  • I do this anymore I feel totally isolated, I wish I could find an advocate to help me and speak for me.....Thanks Mary I am sorry I am at the end of the line at the moment Tx

  • Where are you located, just wondering where you are located.. I could find your MP's email address for you, and stuff like that.. or perhaps somebody on here lives near you. Send me a PM if you want. Your MP would help you, and so would the hospital if they heard about it - PALS.. send me some details and I will dig some stuff out for you, if you want. Mary F x

  • Gosh I am so sorry to hear this, how awful for you! I hope the physical injury is starting to improve, I totally understand why you are screaming mentally! I agree with Mary you really must report this or they will do it with someone else! I had the same thing here in Italy with them googling APS when I was rushed into hospital. As a result of that I always carry in my handbags, purse and anywhere else something on my medical conditions and where to look for more info in English and Italian in case of emergency. Doesn't help if they don't or won't look at them (luckily they did) but that is the best I can do in case of emergency that makes me feel less anxious about being taken ill or having an accident.

    Do take care. Dx

  • Im am so very sorry you had to experiance this and it is all of our worse nightmares. As has been said above you must report this so that lessons can be learnt or this will continue to happen not just for our condition but for others too.

    There is an organisation called the Patients Association, here is the link and they have a helpline. They will help you with this if you want support.


    You should also take the report you write for the above to your MP who will also have the clout to take it up. As Mary says this is not necessarily about naming and shaming individuals but changing cultures, systems, practises and improving knowledge. Only by people like you speaking up when you have got your breath back and find the strength can things ever change. We will support you on this if you need it. Good Luck. xx

  • I have sent you another personal message, thanks so much...if it is ok I would really appreciate your support kindest regards Tx

  • No problem x

  • i have had a simular situation myself,loosing my balance, eyesight, falling and bleeding. please check with one of your doctors about a medication called prochlorperazine 10 this has helped me with the dizziness and falling, i still get dizzy and fall but most of the time i can control it. I wish you well.

  • So sorry Tracey-lou. I am in Tropical Australia, and have had so many probs since young stroke, and more-more, threatening to wreck my life, until in 2007 researched- found lupus- then APS Foundation and APS Forum (all wonderful people)n London, and travelled to London in 2010 with referral to see London Bridge specialist, and positive diagnosis. Luckily between all probs, I have been able to overcome, fighting docs etc and living a wonderful life. All the best- it is such a shock when you feel bereft by nurses, docs as you and I have been.

  • What a terrible, traumatic experience TraceyLou. I do feel for you.

    I was advised yesterday in a message from my respiratory consultant that if I feel really unwell I should go to A&E. As if! I too have realised that, first, they'll ignore you for hours. Then some spotty oik in short trousers will eventually turn up and not have a clue what you're talking about. Complete waste of time.

    I have taken a policy decision never to take myself to A&E again, unless with a doctor's letter, or unless in an ambulance (where at least you should get some immediate medical attention). Though that doesn't seem to have helped you much TraceyLou.

    Do we all have to walk around with a file of information on our respective conditions attached to our person so we can hand the leaflets out every time we encounter a new, ignorant, medic?!

    Sorry to sound so negative and bitter. I also am having a very hard time at present with medics and their wretched medications.

    Soldier on!!! :-)

  • recently a posed this question to a top consultant at st.thomas' and he said I should take letters in with me, all the letters state is that I have aps, so no help there! they just do not and cannot be bothered many thanks for your caring support Tx

  • Coppernob- I so agree with you about not going to A&E- Several times with my life- threatening strokes/hospitalisation - they had no idea from 1978, 1983, 1994, then so horribly from mid-2003 to early 2005, until my researching and fighting docs - till truth was out -finding about APS and Prof Hughes, till diagnosis in 2010. Yes, to every doc- new or old I have to take letters, scans, tests, reports in convenient packs. It is survival of the fittest. Slowly I'm forcing knowledge of Hughes/APS in my region -even lately at Base Hospital for colonoscopy- they decided -off plavix for few days for procedure to self inject clexane for first time. Privately new GP has, when hearingfof severe bruising, has faxed to see a haematologist/ oncologist or first time, and urologist ordered echocardiography/doppler- first ever done. Slowly slowly.

  • I find that that doctors do not know enough about APS, even in Canada - doctors almost sent my wife home 2 years ago with abdominal pains - turns out she had a heamatoma the size of a cantaloupe - resulting in damaging nerves in her right leg, 5 months in hospital, complete damage of her bladder, almost severing her urethra from her bladder. living the next 3 months with drainage from both kidneys, abdomen, and a catheter. had to learn to walk again with the nerve damage in her right leg.

  • My heart goes out to all of you for these awful problems you have had to endure I just live in hope that if nothing else the so called compassion that you would think a Doctor went into the proffesional for in the first place can be found kicking and screaming from somewhere in the depths of their souls jogging them to at least look and treat for something even if they can't bring themselves to utter the words they see m to hate using so much - APS. I myself who have struggled this past month or so with a sudden change in attitude with a previously sympathetic and caring GP and was hitting a brick wall. I found myself with another in the practise I had never met due to my latest chest and ear infection this week who was saying out loud as she was examining me, I just want to make sure I have not missed anything and then went off to get the machine to take my breathing stats before prescribing steroids. Sometimes fresh eyes and attitudes are what is needed.

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