My husband has been confirmed as having APS after a 3rd recent stroke. He was evidently confirmed as having the antibodies 6 yrs ago! But info was not correctly passed onto ourselves. He takes warfarin but it is being very erratic. He was discharged from Sandwell hospital with no follow up. I am now trying to get us back in the loop as we have never spoken to any specialist about his blood. Is there anyone who can suggest which type of specialist we need to see regards his blood and hopefully preventing any further strokes. We have seen stroke specialists but feel the cause has not been fully followed up. We are prepared to pay and travel.
Yours hopefully..
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Vespa1
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Hi, you could if you want a private appointment travel to The London Lupus Unit, London Bridge, taking all your recent blood tests done by GP, the more recent the better, also check Thyroid status, also levels of D, B12 and Iron. Also here is the list off The Hughes Syndrome Foundation charity website: hughes-syndrome.org/self-he...
It is in your GP's interest as well as your's and your husband's interest that local care is guided with the correct specialists knowledge. Let us know how you get on, come back to me if you need further help. MaryF
Hi, the list says what the personal specialism is for each specialist, however others on here may give you localized feedback which will help your choice. MaryF
It might be worth a mention to the stroke doctor, that they might want to check your husband does not have a hole in the heart. I had one that was only discovered after multiple TIAs. I had previously had a stroke. My condition went undiscovered for 60 odd years despite several heart examinations including the tiny camera. I have had Hughes Syndrome for 40 odd years.
About 20% of the population have a hole in the heart and normally it isn't a problm- but of course it can be if you have Hughes Syndrome/APS.
Closure of the hole (Patent Forament Ovale aka PFO) is now relatively simple- and no TIA's since.
Teated positive after his 2nd stroke. no test done prior to that as far as we are aware. No one ever followed it up and it was said as passing remark which unfortunatly we were not aware of the seriousness of it. Why do you ask?
Because I tested positive 3 times and have never had any major events. Have a lot of APS symptoms that prevent me from working. Just wondering who else is like me out there.
hi , i live just outside birmingham , but travel down to st thomas s to see prof hunt, i personally have found in my experience not very convinced but the doctors ive seen up here, but i may be wrong, personally ive not found anyone to look after me, they normally say... as your seeing a doctor in london they dont need to see me, i had my first stroke 10 years ago, had 5 by time diagnosed and heart and everything else problems, i keep my inr at average 4, im 48 now, best wishes to you hope you get the appropriate help soon x
Thank you. I think I getting the message that his INR needs to be higher than drs we have seen so far have said. Thinking of buying new Roche testing kit but want to make sure they keep him on warfrin first due to cost.
Hi sorry for late reply, i was originally diagnosed with Hugh s by a neurologist at the QE , but continued getting worse as not given the correct treatment so with my better half asked my doctor to PLEASE write to st thomas to see if they would give me an appointment, my doctor wrote and i got an appointment for 6 weeks later , hope you get some good care
Thank you that is just around the corner from us. Will look into it.
Yes, Professor Caroline Gordon is among the best experts on APS in the country. She knows all of the teams in London including St Thomas' and UCL. I hope you can get an appointment
Thanks for letting us know about Dr Situnayake TinythePanda - they're not on our list so I will write to see if they are happy to be included.
Can you say why you would go to London Bridge? Is it a clinic that specialises? All these names are new to use and trying to get the best advise as obviously previous advise from doctors not enough.
Thank you for taking the time to answer it's all brilliant.
Thank you we are due to see a stroke specialist next week and I will be asking for a referral to APS specialist so taking all info I have gained from this forum with us. Fingers crossedx
i write on behlf of my wife shes been dignosed with APS we live in birmingham she was sent to a rumertogilst ( blood expert i think ) Dr Khan ? if i recoil at good hope she was good to talk to if helps
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Quadrantanopia
STOPPING WARFARIN IN APS PATIENT
APS in the summertime.
Catastrophic APS or just a bad 3 weeks.
