APS "almost" diagnosed after stroke - Hughes Syndrome -...

Hughes Syndrome - APS Support

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APS "almost" diagnosed after stroke


Hi everyone. I have not posted on here before, but have been an avid (almost obsessive) reader! In a nutshell, I live in Yorkshire, 43 years old, fit and healthy female. Had past issues with cardiac arrhythmia (fixed by ablation in 2013), but suffered a stroke in August 2015 whilst on holiday in Portugal with my lovely husband and kids (age 11 & 7). After a few brain MRIs and blood tests, to cut a long story short, it seems I had 2 separate strokes (1 cerebellar, unknown date, and the recent one in Portugal in the occipital lobe). Only remaining physical effects from the actual stroke in August last year is loss of some of the field of my right hand vision. On investigation, I have had 2 separate positive blood results for anti-cardiolipin. They think I am primary APS. I am on bisoprolol, atorvastatin and rivaroxiban. I suffer almost daily with headaches and dizziness to the point where I get anxious it is another stroke or TIA, which obviously compounds the symptoms!! I also have tingling in my scalp and limbs, and some numbness in my arms and legs at times. I am really grateful for this site and the experiences of others. I just wonder, why are some days so bad and some ok?? Also, I am interested in others on the NOACs and if anyone has details of the outcome of the RAPS trial? I am gradually trying to get to grips with it all, and welcome any thoughts and advice. One thing I refuse to give up is wine, so sat here with a nice glass of Sauvignon Blanc whilst I type! Thanks everyone x

14 Replies

Hi there, there are others with very similar experiences and also drug prescriptions to your own and I sure they will respond to you. Are you seeing one of our recommended specialists? If not and you do have a good one, the charity will be keen to know as the list is always expanding. It is vital that you have good care in order to get the best results possible: hughes-syndrome.org/self-he...


ClaireDibb in reply to MaryF

Thanks for the welcome. I have so far been under Dr Bamford, a stroke neurologist in Leeds. He was the only one who thought of testing for APS. In Feb I see him again and I think will then be referred to a haematologist. Although I've had 2 highly positive blood tests they were from different labs so I need another from the second lab to reconfirm! I have so many symptoms though that I am in not much doubt it is Aps.

MaryFAdministrator in reply to ClaireDibb

Thank goodness he went looking for it. MaryF

Ray46 in reply to ClaireDibb

I am in Leeds also, probably a bit ahead of you since I was admitted with TIA in Jan 2015. Leeds stroke teams (at least those at LGI) seem to be fairly good, and I think they do APS testing for all young-stroke (under 50?). It was about the last thing on the list for me, but to be fair they were looking at my BP (250/140) as primary cause of stroke, and trying to find reasons for that.

I wouldn't expect too much from Leeds Haematology - I spent most of a consultation going over pros and cons of rivaroxaban and warfarin and then got phoned later same day to be told "you can't have rivaroxaban (or any NOAC) because it doesn't work for APS - the only option is warfarin". Don't think they know much about APS - mostly cancer docs. Discharged from Haematology once I agreed to take whatever anti-coagulation rheumatology offered. Be interested to see what they say about you since you are already on NOAC.

The Leeds Rheumatologists (at Chapel Allerton) seem to be much more knowledgeable on APS and you probably want to get a referral in to there (connective tissue disorders clinic). They are, however, stupidly busy and overbooked (be prepared for a long wait when you go), and communication is hit and miss. I am still waiting for test/scan results from October, apparently I am on the waiting list for the December (i.e. 2015) clinic but they are "several months behind". Asked for results over the phone, thinking must be normal or they'd have called me in, and they started reading out a radiologist report and then stopped and said "oh no, I can't tell you that over the phone you need to come in and see someone". So get me an appointment then!

Hello Claire,

I live in Yorkshire and Dr Bamford is my Neurologist and I am Primary APS. I had many Arterial Clots and PE's. I am also with the Rheumatology Team in Leeds under Professer Emery. I don't have a Haematologist but I am supposed to be seeing a Blood Specialist but this has not transpired yet.I inject Clexane twice a day along with Asprin and also take Mychophenolate to help keep immune system in check. I do get the numbing in the hands and pain in my joints. The team at Leeds think I have never had a positive test for APS but I have recently found copies of my positive results from the early days, taken at Bradford, before my major clotting incidents so i will pass them onto the team next week.

It took me a long time to get diagnosed and the only thing I can say is that it is best to keep telling them about your symptoms and eventually you will get somewhere. I was diagnosed Primary APS without them having any positive results for anti-cardiolipin (that they had copies of) and they never took my word for it that I had received positive results before being on clexane. I too am waiting for the outcome of the RAPS trial. All I can say about some days being better than others is that there does not appear to be any pattern for me, I simply have to accept the bad days for what they are and welcome the good days when I can get them.

If you are not getting a diagnosis ask to be passed over to the Rheumatology Team as they know very well that Diagnosis can be made without the positive tests. Your history alone is enough to diagnose.

Stay positive, stay strong and enjoy the good days.

Take care


ClaireDibb in reply to MrsBL

Thank you so much for your reply. It is great to know there is someone else close by!

Please feel free to contact me anytime if I can help in anyway or even if you just want a chat x

That would be great. Is there a way on here to continue a private chat so that I don't bore all readers!!

Hello Claire, I think I have sent you a PM to check if this is the correct way. If this worked then all I did was to click on your profile name and then click on message.

Fingers crossed, it works.


Good luck! I'm recently DX'd in October of 2015! I'm having more bad days than good of late! But I must persevere and keep fighting m docs! It gets tiresome to argue and not be understood! You sound like u got it down pat! Good for you! I'm glad! I'm still having trouble getting therapeutic on warfarin!i wish u the best & I too am always around if u need to talk! Godspeed!

The most important thing is not to give up the wine! Xx

Hi there,, I live in scarborough but go to chapel Allerton hospital in Leeds. I know they are very busy in the (connective tissue clinic ) and the care is excellent. Prof. Emery is well versed with Aps. I 've never had a clot,but have very high antibodies. There is also a specialist nurse who you can ring anytime and if necessary she will slow you into one of the clinic's.if you want a chat just send me a private message .hope you get sorted soon. Elfie

ClaireDibb in reply to Elfie1

Hi - would love to chat. Not sure how to do it privately? Can you message me privately and I will respond? Thanks

Hi Claire, I am also 43 years old and live in Leeds, I'm now not 100% sure I have APS as my letter from the neurologist says and I quote " the results from the cardiolipin and glycoprotein antibodies have shown she is likely to be a lady who has anti-phospholipid syndrome". So have I got it or is it just likely. I find he talks in riddles and leaves me unsure. Also even though the MRI of my brain he showed me had two small white patches again he was vague about me having a TIA, (I had complete numbness of my left leg and arm and a numb tongue) on two separate occasions. He called them small microvascular events and small vessel disease. My confusion continues. He has put me on Clopidogrel and Aspirin. I asked my doctor if I could see the rheumatologist recommended on the Hughes site, she wrote to my neurologist to enquire about this. Which resulted in a letter back (I was copied in ), stating his experience in Leeds and Sheffield and how he has lots of experience in APS and strokes and as I have no rheumatoid symptoms why would I need to see one. He obviously took offence to my request. He has now referred me to haematology. Although he stated I could have a second opinion if I wanted one. Again his tone in the letter signalled to me he was not very happy with my request. Another reason I wanted to see someone else is I find him quite intimidating, so much so I took a friend with me last time as I didn't want to see him on my own. At the end of the day I just followed advice in terms of an APS expert on the site based in Leeds. I am now concerned reading some of your replies that haematology in Leeds may not be what I hoped. I don't know what NOAC 's are could you explain please. Although I am currently taking part in dry January, I would also like to go back to having my red wine but not sure if they put me on warfarin that it will be possible.

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