Recently diagnosed

In February I experienced some numbness in my right arm and leg - I wasn't overly concerned so made an appointment to see my GP, but they sent me immediately to A&E. I was fast tracked to the TIA clinic the next day and given an MRI. Based on my symptoms and some small areas of Ischemia they diagnosed a TIA.

It now turns out I have a PFO (hole in my heart) and I've recently been diagnosed with APS. They are still waiting on the results of my Lupus Anticoaguldnt.

Up until now I've been on Clopidogrel since the TIA, but I'm about to be switched to Warfarin.

Honestly, it all feels like a bad dream. Apart from that one morning I've not felt ill in the slightest and to be told I'm not facing a lifetime of warfarin and I need a small operation to close the hole in my heart. It sometimes feels like they've got the wrong person!

I'm 29, I have a 2 year old little boy (I feel very lucky to have never experienced any pregnancy related symptoms of APS) and I'm generally fit and active, with my main passions being Yoga and Horse Riding.

I just thought I'd introduce myself - I'm hoping to have a good read over the next few days and I hope I can find a few other people to chat to on here. I feel very alone on my diagnose at the moment!

12 Replies

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  • Hello and welcome, this is a great forum and you have landed in the right place, lots of people share a similar story to yours. However I will say that you have an excellent GP, others at times go through years of awful events and no diagnosis, the fact that you have a diagnosis is good! It may not feel that way currently, but if you condition is managed well there is no reason not to return to some sort of normality. Please do have a good look at our actual charity website: hughes-syndrome.org/

    On that site, a list of specialists recommended for excellent up to date care, across the UK: hughes-syndrome.org/self-he...

    Any blood tests done, are better served with samples being taken at the local hospital if you can, as they can be a bit sensitive to time lapse if hanging around for a collection in the GP surgery.

    Do use this forum as much as you wish, and ask questions, we are a friendly bunch who can help with most questions.

    MaryF

  • Thank you Mary! That's very interesting about the blood tests, I'll keep that in mind for the future!

    Yes I've found the website excellent, a really good source of information and has given me a lot of hope that I can pretty much get back to normal! I'm hoping to get back to horse riding soon!

    I've not seen a haematologist yet (my referral via TIA clinic is for June) and I'm considering asking for a referral to one of the specialists in my area, preferably one with a specific interest in pregnancy. My friend is a Dr (in a completely unrelated field!) and she said their should be a specialist obstetric-haematology team I can ask to see.

  • Hello and welcome.

    I fully agree with what my colleague, Mary, has advised you.

    It is certainly good that your GP has acted swiftly and correctly in this.

    Where are you from?

    Best wishes.

    Dave

  • Thank you Dave!

    I live in Preston, Lancashire!

    I do feel very lucky to have been taken seriously both by my GP and the Dr who initially saw me in A&E - it would have been so easy for them both to dismiss my symptoms.

    I also have to hand it to my TIA clinic and the senior consultant who has been great with me! I'm hoping my experience with the Haematology clinic is just as positive!

  • Yes it is good.

    Many patients need to see an APS Specialist, many of whom are Rheumatologists. There are a list of APS Specialists on the charity website:

    hughes-syndrome.org/self-he...

    Keep in touch.

    Dave

  • Hi - I echo what my colleagues have said as you have indeed been lucky on both scores. They considered I had a TPO as a cause for my Stroke and that was before they found I had APS too.

    Given that you are symptom free it would seem to me that you have every chance that you will continue to be so. Taking warfarin will be a precaution and I cant stress enough how lucky you have been to have had a complication free pregnancy with a TPO let alone APS. That all bodes well for your future plans for another but Id advise getting a specialist obstetric Consultant in APS.

    Good Luck.

  • Thank you! I really hope my previous successful pregnancy bodes well for the future. I realise I will have 4 different consultants (oh the joys!) but it's a small price to pay for it all going smoothly.

  • Hi there, I too have a similar story and when i was pregnant with my second was diagnosed with a ruptured sinus of valsalva aneurism. That was three years ago, I too am waiting on word of operation to fix me. I also have lupus, rheumatoid arthritis and clotting issues (had a pulmonary embolism when she was 9 months old). Glad to help you with any questions and share our stories as I know how you feel, I still think can this be me and then at other times I am scared to sleep when the chest pain comes on (pericarditis is a regular with me). Hope you are recovering well, sounds like you have been through the mill x

  • Oh gosh it sounds like you have had a tough time with it all!

    Did you have APS diagnosed prior to your pregnancies? I know I'm finding all the stuff pretty heavy going with the risk factors, but it either doesn't effect me that badly or I got really lucky!

    XXX

  • No diagnoses of any sort, when my boy was born, the consultants kept asking me if I was healthy during the pregnancy, I thought i had the flu, looking back it was obviously a lupus flare and we nearly lost our boy, but after a month in intensive care he pulled through. His inflammation markers were at 69 they should be 6 or less and meconium aspiration badly affected his lungs and he was intubated and sedated for some time. Thankfully we are happy we have two healthy children and would not risk another one. It was only after I was having trouble with the pregnancy with my girl with chest pains when the hole in my heart was diagnosed and then when she was nine months old the heart consultant suspected lupus, adding all of my symptoms together and seemed more concerned about the non recovery of my pulmonary embolism and disabling rheumatoid arthritis!

    How was you hole in the heart discovered? Where about is it? can they fix it with keyhole surgery?

  • Oh gosh that doesn't sound good at all to have that. Thank goodness you have 2 happy healthy children. I'm still very undecided about whether I'll try for another.

    I've not had any symptoms as such with the hole, it was discovered in a Bubble test (which my TIA consultant referred me for - when they were doing the test they were convinced they wouldn't find anything and the look on their faces when they did!). I'm still waiting for my cardiology appointment to come through, but my TIA consultant says they'll refer me for a camera to locate the hole properly and then because of my age it needs closing with an implant. He seemed to think it'll be done as an outpatient procedure, going in through my groin, but I'm not sure whether the fact I have APS and I'm on warfarin will complicate that.

    Have you had surgery on yours? They've told me mine is mostly likely a PFO but I guess that won't be 100% confirmed until I have the camera.

    XXX

  • Just to help put you r mind at rest a bit more, none of the complications were caused by the hughes (except blood clot). I too was diagnosed with the bubble test, I am not sure how they will fix it yet, but have been waiting for three years now. The doctors keep an eye on it with scans ans MRIs. I am not sure but what is a PFO? Hugs to you xx

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