Antiphospholipid Syndrome (APS)

In September 2021 I suffered a cerebellar stroke. I was 46 years old and had no indication that this would happen. I didn’t smoke, drink alcohol, take drugs, have high cholesterol and high blood pressure. I was also fairly fit and not overweight, so this was not only a shock to me and my family, but also to the doctors that treated me for my 8 days in hospital.

My recovery is still ongoing, but the immediate issues focused on recovery of the right side of my body (which was fairly quick) and the spells of dizziness and almost constant fatigue. Just over one year later I have made good progress with only rare spells of dizziness and fatigue compared to where I once was.

The big question for me was ‘why did this happen?’. I had the usual tests while in hospital without any positive confirmation of the cause. I had an outpatient bubble echo appointment which identified a large PFO (hole in the heart). This was at last a potential answer. I was referred to a cardiologist who agreed that the PFO should be closed subject to a few outstanding blood tests.

I was referred to a haematologist for the blood tests which resulted in me testing positive for Antiphospholipid Syndrome (APS). APS is a disorder of the immune system that causes an increased risk of blood clots. This was at last the probable cause of my stroke. My PFO closure procedure was delayed indefinitely due to the added risk of further blood clots and I am now being treated with warfarin for APS.

I am on other medications, but warfarin has made a real difference to fatigue levels, reduction of headaches to almost zero and brain fog! APS is a condition you have for life, it’s not clear why you develop APS, but treatment is nearly always warfarin (again for life).

I wanted to post my story to not only raise awareness of APS, but to encourage other stroke survivors to keep pushing for answers when at times you feel you are getting nowhere. It has been a long challenging process to finally get the answers to the cause of my stroke, this with the treatment has now helped me have a more positive outlook on the next stage of my life.

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A very encouraging and interesting post thank you for sharing :pray:

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@Glen_G hi Glen welcome to our forum and sorry you had a stroke (same as mine).

I thank you for sharing it is indeed important for us to keep pushing for answers you did, it well done. At least you know.

Keep going we will all get there one day best wishes Loraine

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@Glen_G welcome to the forum & thank you for sharing your story. It makes an interesting read. I’m glad they’ve found some answers for you. Given your APS diagnosis does that mean you don’t need the PFO closure? Does the warfarin mean there’s no risk from your PFO? Sorry for the questions I’m just curious.

Wishing you all the best.

Ann

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Welcome @Glen_G thanks for sharing your experience with us.

Whilst I’m sorry you had a stroke I’m pleased they found an answer to your question ‘why did this happen’, it’s good the warfarin has eased your symptoms.

Best wishes

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Hi Ann

I had the same questions and the doctors are sure that the APS is the primary reason for my stroke and the focus of my treatment.

The PFO is secondary and apparently quite common as 1 in 4 of us have a PFO and many of us live full lives without have any issues. On that basis they will not close the PFO, plus there are risks of the procedure e.g. bringing on AF.

Taking warfarin reduces the risks from APS but doesn’t negate the risks from having a PFO.

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