Very confused!

I'm so glad to have found this forum! Right, 5 years ago I had 2 miscarriages and during these pregnancies I also had heart palpitations. I was referred to a cardiologist who did the blood test for anticardiolipin antibodies which came back positive. I was prescribed aspirin and went on to have two healthy babies. However since then I have not been told anything. I recently saw a new gp about contraception and he's the first dr I've seen whose even heard of the syndrome. He also is the first to say I shouldn't be on the pill! Now my question is if 5 years ago I had the tests will the results be the same now? And does it mean I have aps or hughes? I've recently noticed I've been getting a few sporadic heart palpitations and pins and needles in my arm. What do I do? Just start taking aspirin again? TIA X

6 Replies

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  • The first thing to do is not panic! Its very annoying when you get mixed messages so I can imaging how frustrated you are feeling.

    First things first. When you were put on Aspirin did they tell you when to stop taking it or if you should ever stop taking it? Did you have more than one blood test and get told you have a dx of Antiphospholipid Syndrome?

    Given that your GP has admitted no knowledge of the Syndrome I think its reasonable for you to ask to be referred so that you can get a proper dx and the advice that you need for your on going medical needs, especially as you are now taking oral oestrogen's which could be contraindicated if you did indeed have APS.

  • Thanks for the quick reply! I'm pretty sure I had a few tests. But nobody ever gave it a name as such. That's why I'm confused, does having anticardiolipin antibodies and recurrent miscarriages mean I have a syndrome? I just remember taking a phone call on my way to work one day from the cardiologist saying to take aspirin! Once I had my baby I was told to stop taking itif I wanted to. I don't want to waste people's time if there's a chance it has all gone away. Or worry my family as they like to overreact! x

  • Dear Jennifer: I would be a very good idea if you read the archives at HughesSyndromeFoundation,com.Many of your questions will be answered there as many patients have asked the same quesions as you.You will be amazed at how one question will make you wonder about another.APS,sticky blood,APl,HughesSyndrome, are all the same disease. It is to what the degree the disease is active that matters. My APS is managed on aspirin and I was just diagnosed in 2011, The other reason to be diagnosed is because it is a habit of the disease to run concurrently with other autoimmune diseases. Autoimmune disease is a very big umbrella with many, many diseases under it. APS is just one of them.

    I believe I have always had it and my medical record reflects just that. One autoimmune disease after another throughout my life. I also have CNS vasculitis (autoimmune) which is "quiet" or nonsymptomatic at this time. No one knows what or why it will awaken at a later time. But it will lie just under the surface like a big bull frog waiting to jump up and surprise you. What I believe is irrelevant - the doctors don't know the cause of this disease or what the triggers are that awaken it.

    Go back in the patient forum and read a few weeks. Unfortunately, they have had an upgrade to their system and with any new system they are working the bugs out. It is not their best reflection right now but like anything ... the bugs will be gone soon and every one will be back to their very supportive selves

    You have done well to find this Forum. It is a wealth of knowlege and will stimulate you to ask more questions and the more you know the more you'll be compelled to know. This disease takes a lot of support and meeting the co-patients on this Forum has done me a world of good.Other patients have taught me how they handle their situations and I hope I help when I can. I've learned so very much. Mostly, administration has many pathways that will lead you to current studies and research. You should have a medical bracelet /necklace with your medical knowlege on it. Mostly, you need a rheumatologist to diagnose you properly. If you are in the UK you can find a specialist near you at the Hughes Foundation Site. If you are in the States, it seems APS is not specialized. They feel all rheumatologists should be as knowlegable about APS as any other autoimmune disease. APS has a psychological head to roar occasionally and you can find a lot of sympathetic help to hold you up when you are down on this site. Many of us have been there and it is a most difficult part of the disease to me. Pain I can tolerate, but perpetual down in the dumps..so much worse for me and those who know me.

    Good luck on your journey, Jennifer.

    Warm wishes and plenty of smiles,

    CanaryDiamond

  • Hi there and welcome, please let us know where you are located, as we have a list of specialists in the UK, and if not, via other members you can probably be guided to the right person to help. You will also need your Thyroid investigated as that often plays up with APS. You probably need to be back on your aspirin as you wait for further action. A specialist with the correct working knowledge will be able to fine tune things for you. Mary F x

  • Hi Jennifer and welcome.

    I second what my colleagues Lynn & Mary have advised.

    Best wishes.

    Dave x

  • Thanks so much for your replies. I'm in Norfolk, England. I'll try and have a proper read of the website. Thanks again. X

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