Sticky Blood-Hughes Syndrome Support
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I have been reading all the interesting posts and want to add my experience. 26th July I had a mitral valve repair and Atrial valve appendage. On 1st August still in hospital my hubby was talking to me and he said I suddenly started talking nonsense and asking where was I etc. I do not remember any of it. He rushed to get a nurse and was told she was not my nurse, he said I don't care someone needs to come. Apparently three nurses came and started doing ECG s etc asking me questions testing strength etc. then my surgeon came. Apparently 3 times that day which I don't recall. I had a ct and later a few days an MRI. I had right sided weakness and slurred and had trouble for a week with speech. Rehab doctor said scans clear! I started getting arm weakness left side. Had balance difficulties wahich physio worked on. Was discharge 8th August saw cardiologist 18th echo week later which showed atrial fibrillation. Saw surgeon 1st Sept and he sent me to a neurologist regarding arm weakness which comes on with no strength and also sometimes can't stand. Neurologist showed us on MRI stroke, microdot heamorrhages and amyloid angiopathy. He suspected symptoms epilepsy. So EEG was clear but he said doesn't rule out epilepsy. Keep recording symptoms and see in in November. Off warfarin on other coags and he stressed take them so as not to have another stroke.( have since been told TIAs do not show on scan but strokes do) was told in hospital I had a TIA!!! I am still get AF and waiting for last results of ECG from cardiologist. All these symptoms are very disconcerting and have been told I am getting constant TIAs is this correct??

Sometimes numbness of hand and fingers, weak arm can't lift it, no strength, only once was standing and fell against bench and left leg went. Slurred speech. Don't know if I should go to A&E when they happen as they last 10 to 20 minutes. Last thing you want to do is waste their time.

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Hi there I am in hospital now an I have been here for 4weeks I woke up with a very bad swollen right leg . which I couldn't move and I was getting out of breath .so my doctor told me to call a ambulance an go straight to hospital .as I have had pe on my lungs and both of my legs are blocked with dvts... So I have no feeling in my right side also my bladder has stopped working and my tia MRI came back OK I have had CT scans but still no answer to why .... My headaches are driving me mad lose of memory . Speech all weird.. forgetful. Lack of energy. and still no answer ...I will keep you posted of any news and I am on 35tablets a day and 2injections..


As we often have microembolies they are not seen on a Scan of today. Mine were never seen. Now I am on Warfarin with rather high INR-number. Hope someone knows APS among your Doctors at the hospital!

At least you should be properly anticoagulated and miss those neurological symptoms that you have from APS!

Best wishes from Kerstin in Stockhollm


Hi there,

I read your question a bit fast now but you did not mention if they have taken bloodtests for APS? So actually you do not know if you have APS or not. Is that correct?

I had TIAs like you and they could never see anything on me but i had all the antibodies in high titres and I have had that now for 14 years.

When I started baby-Aspirin (in Sweden it is called Trombyl) my neurological symptoms were better so I suggest at least you try baby-Aspirin and see if you feel better.

I have Pulmonary Hypertension and leaking tricipudalis- and mitral valves. I am not breathless and selftest on Warfarin since 4 years and feel rather ok.

I suggest you get bloodtest if not done and see a Specialist in APS and also that you get very good control of your blood-pressure. I did not understand if they had taken you off Warfarin??

Also we have found here that the Neurologists do not understand what APS is about - too thick blood that has to be properly thinned at a rather high level and kept stable also.

Best wishes from Kerstin in Stockholm


I suggest you ask your Cardiologist if it is ok that you try Baby-Aspirin before you try it yourself? Better to be safe.



Better to have the time to waste than have no time at all! I say go get checked and the sooner the better. I didn't and waited too long and had strokes. "Better safe then sorry" is my motto now. You are not wasting their time, if and , hopefully they will not, find something. Hopefully you have went to be evaluated. Let us know of outcome. I send you healthy wishes.


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