Sticky Blood-Hughes Syndrome Support
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Stroke like symptoms

Hi everyone

I have posted this question on the Hughes and Lupus sites.

Please could anyone who has had stroke like symptoms but nothing has shown on scans help me by replying below with your experience or send me a private message.

My hospital are saying they think my problems are functional although luckily my gp who I have been with for 25 years disagrees. I think it is because of my lupus and aps.

I hope if I have evidence that other people with lupus and aps have experienced the same 'episodes' they might review their diagnosis. I almost feel as they don't believe me!!


Wishing you all a good day


9 Replies

Hi Jane, I have had what seemed to be a small stroke in the beginning (11 yrs ago) but nothing ever showed on scans. Also TIA symptoms mainly whenever my inr drops below my docs were pretty good as they had it confirmed with London to higher my inr from 2.0 - 3.0 to what it is now 2.8 - 3.5.

My foggy head worsens. I stumble more, my words jumble up & I cant function as well if inr is low, I have even been known to slur ....... they say these are TIA symptoms I have been experiencing.

Sue x


That's interesting Sue. I am pretty useless with an INR below 3, and often think I should not be driving as I can't remember where I'm going or why. But docs have never taken any notice at all of these symptoms (gps that is ) I have never been told they may b TIA related. I assume I have to just live with it all.


TIAs often leave no damage behind which a scan might pick up. That's a good thing, though if a lack of collaborating evidence stands in the way of a diagnosis and credibility that can seem like a bad thing. Most of us have had to deal with a doctor/ doctors who question our sanity.

We believe you. Hang in there. Are you seeing a doc who has APS experience?


Yes, tia's often leave no damage. Although, over time, they will - if there are enough of them. My neurologist was taking my tia's casually until he actually looked at my last mri, rather than just reading the report. He now has changed his tune completely. My report said that there was 'white matter, etc.' but there is evidently a lot of it. I've had both a stroke and many dozens of tia's. So, I certainly hope you don't get my history! - but know that what is happening to you is very real and a gp can disagree but you can have tia's with aps.

All the best!!!


sgtraf Have an M.R.I. Scan of the BRAIN and NECK and go from there I have one and it set my mind easier.


Hi all.

Thanks so much for replying. The A&E consultant actually said there was evidence of my previous stroke and explained about how it affected speech. Then a neurologist said there wasn't one before!!!! On the day I was discharged they said my INR was fine - it was 2.4!!! I'm supposed to be 3.5!!!! So I feel frustrated as you can imagine!

I was diagnosed with lupus over 20 years ago and have been on Warfarin for aps for 11 years but my symptoms have got much worse over the last 2 years. I saw a rheumatologist in April, having not seeing one for the previous 4 years and she was happy to refer me to London.

I did see prof Hunt in August and she has asked my hospital for the scans as she thinks her team will find something. Just hope they do!!!

I'm seeing K Breen or one of her team in early December so hope I can get results and answers.

Thanks again for your help.

Jane x


I am glad you are off the right place, and that some sense is seen! I wish neurology in general could get a little more finely tuned, although of course there are some good ones, who have spotted APS correctly and referred or advised. I wish you all the best, and it will be interesting to see the results of scans.! Mary F x


I've been diagnosed with APS for 9 years post IVF. Been taking aspirin ever since, then I had two tia's out of the blue last month. First hospital just said that I had had a panic attack! GP husband not convinced so contacted local team and been treated as having them since. 2nd event was very transient with only speech loss but right in front of my husband. He had no doubts what happened!

Still waiting for the official report but TIA consultant cannot see any evidence of a bleed from either event on MRI scan. ECG, Echocardiogram & carotid artery clear.

Waiting to see Dr Hannah Cohen next week.

I've never been seen by an APS consultant since diagnosis so it should be interesting.


Very good that you are seeing a Specialist next week. I had TIAs and a specialist said they were microembolies most of them. They did not show up on MRI etc becauses too tiny, Later on I had to have warfarin with good effect.

I wish you Good Luck next week!

Kerstin in Stockholm


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