Now what?

August 27, 2012. Today, I was diagnosed with Antiphospholipid Syndrome. I'll never forget this day. I'm at a complete loss as to what to do. Should I be afraid, should I throw myself on my bed and cry, should I tell people, should I just pretend nothing is wrong? My mind is going a mile a minute and yet, I'm strangely calm. As if the seriousness of it all hasn't hit me completely. I'm in a state of shock I suppose. After my doctor appointment I came home with the intention of getting online and researching until i was satisfied that I wasn't going to fall over dead at any minute. But I waited up until about an hour ago, cause I was afraid of what I'd find. I stumbled across a blog lifewithaps.blogspot.com/ which led me here. I stared at this site for a few minutes trying to decide if I should join or just close my laptop and hide under my cover in bed and try to pretend it was all a dream. It can't hurt to join...

30 Replies

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  • Hi.....I encourage you not to "stress"....as long as your Rheumatologist monitors your blood on a regular basis you should be OK.....I was diagnosed 2.5 years ago ...I now take 320mg aspirin daily and 200mg Plaquenil 2x day and I have been doing fine......and I am 64 years old

    You will find support and info on this website stay well

  • So pleased you have found us, and so sorry that the APS diagnosis has come as such a shock, as it does for most of us. Hope your doctor has been supportive. Lucky he recognises APS as many do not. Let us know where you live as there may be others close to you. Most of us have aps in many different forms of severity and periods of time. I live in north Australia and have had years of not being able to find knowledgeable doctors, and forms of treatment. All the best as you start to meet us all on our wonderful site

  • Bless you, it's a horrible shock isn't it the best thing is that you have been diagnosed and can start treatment. Blood thinning medication. What happened to you that made the Doctor test you, what medication are you on, who are you seeing about this. Don't think it's a death sentence

    I must have had Hughes syndrome since my twenties,I am now 54 I wish I had been diagnosed earlier treatment makes such a diffence, I am now on warfarin INR to be arround 2.5

    I started on clexane. My head is so much clearer. I so wish I had a Doctor like yours

    I am sure you will notice an improvement soon

    Thinking of you . Karen x

  • Hello and welcome. I would try not to stress (daft thing to say i am sure!) but it does depend upon how your APS affects you. I had my dx back in 1998 and have managed since then without too much intervention from specialists. That said, i have noticed a change since Christmas so have sought appropriate help from the professionals. Be assured that everyone here is so helpful and knowledgeable that professional help aside, the members here are kind and supportive and will relate, i'm certain, to anything (& everything!) you may be going through.

    Take care and best wishes x

  • Hello,

    I know how you feel. I am 27 and was diagnosed less than a year ago. As much as a shock it is to be diagnosed with a life long disease, in a way I was a little relieve that I wasn't going crazy and something was really wrong with me. APS isn't a death sentence, just a life change. Yes it can be a struggle, but with the right combo of meds life will be somewhat "normal". I still feel a little in shock that I'll be on meds my whole life but at I would rather find out now than waiting for something completely terrible to happen. This site is an amazing support group, I look through the posts every night just to remind me that I am not the only one out there and if anything I am just glad they caught it early. Where do you live and what are your symptoms?

  • Hello, glad you found us. My limited knowledge of APS tells me that no two people are affected in exactly the same way - it seems to be slightly different for all of us. Although we share a lot of the more common symptoms we all seem to put our own interpretation on them. My only advice is to write down everything that happens to you so that you can discuss it with your doctors on your next visit.

    Remember, there is life after APS - you just have to work your way through things at your own pace.

    Good luck and please keep us updated.

    Hugs xxxx

  • Hi there

    I found this site and it's an amazing support group. Theres always someone around to help you not matter what it is. Get yourself a remember book. Most of us have them, especially if you have memory problems, it's my lifeline. I didn't realise when I was diagnosed what it was until my gp explained, as I was already on warfarin anyway, and nearly ran for the hills when we put the pieces together. Be positive and Just enjoy every day. it does make you push aside all the trivialities somewhat that you thought mattered. I hope you have a better day today than yesterday.

  • Hello to you and a big welcome. When this forum started around 15 months ago, we were just three people and now nearly 1,000. Firstly I am so glad you have your diagnosis... as believe it it or not that is one of the main difficulties - not getting the correct diagnosis, is a seriously tricky issues for many of us - who have had to wait for this at times for years, which can be really awful in some cases. At least now you have your correct diagnosis the real help can begin. You will find by reading various blogs and posts on here, lots of us, including myself have written somewhere back in time....real life histories from start to date, . There is real peer support and friendship on here, and you may find others in your area. Pleased you found us, and things will get better for you. Mary F x

  • Hello, there is life after APS! I was diagnosed 4 years ago and it was a releif as I had spent years thinking I was going crazy as symptoms are so random and now I know what's wrong I can manage better. Medication for the rest of your life is a bummer but for me it means I can live more of a normal life. It is hard sometimes as I think I'm still young and should be able to do things without thinking about it, but I am greatful that I am still here to enjoy my kids and just try to get on as best I can. Chin up its not as scary as you think x x

  • Hello - welcome to the best support group ever. I found this group like you when I was diagnosed but just after it was formed so I feel like we have grown together. Frankly I don't know what I would do without it together with the Hughes Syndrome Foundation which has some great information on its website and can send you out a great pack of stuff if you decide to join them with handy leaflets of info you can show family etc.

    I've probably had APS most of my life but like many got misdiagnosed along the way until eventually being found out by the man himself. As you say after the main shock the next thing for me was to learn as much as I could about the condition (but we are all different) so I could help educate some of the...erm...less educated medical professionals that like to tell us we know better!!

    It's early days yet so please don't worry too much, everyone is different and this condition effects everyone differently. I'm 60 although still think I'm 25 but that's another story! Just wish I felt the same way......

    So let us know how you are doing when you are ready and we will do our best to help and support you. :-)

  • Take a deep breath.

    I was diagnosed around this time 4 years ago, I was off work for the summer so had no distractions. I went a bit loopy- had baths where I sat there until they got cold without even noticing (then moved and realised!), I scoured websites finding out all of the things that were "going to happen" to me, I bought dozens of necklaces saying "I love you" to leave behind as poignant messages to my family when I died, which I was convinced was soon!

    Then I calmed down, I spoke to my Mam about it, cried, then took some deep breaths. Then did some proper research and found out that (as others have said) everyone's different and not everything happens to everyone.

    I can honestly say the best thing about it all is finally having something to explain the weird symptoms that I had, and then, finding this place. The fact you've found it so soon after diagnosis can only be a good thing.

    Don't be afraid, deal with it as you need to, cry, consider, research and ask plenty of questions here, or just rant. There are so many lovely people here willing to support and advise. And if nothing else, my freaking out reaction gave me a lovely new jewellery collection...

    Chin up, keep smiling, it really isn't the end of the world, no matter how much it feels like it right now.

    Tan

    xxxx

  • Do you have any symtoms of APS and are you taking any medications.

  • I was diagnosed in 2001 after a series of terrifying mini strokes. Although I was greatful to put a name to what was happening to me and take a medicine (which stopped the strokes immediately!) I too was severly depressed with the diagnosis. I was "only" 45 at the time and though I knew on an abstract level that I was aging and someday I would be on a number of meds (though hopefully, not on the dozen or so my Mother took,) it kind of hit me hard to get this diagnosis and be put on a med I would have to take daily for the rest of my life.

    And it seems silly of me as I type this now, but I cried and cried when I realized that, no, I was never going to climb Mount Everest -- which had been a childhood dream. I had just assumed that someday, when my kids were grown and if/when we had some financial leeway, I would make the trip to Nepal and do the climb.

    Now. Nope. Nada. Not going to happen. An altitude of that magnitude is not going to be tolerated by my circulatory system.

    But life goes on. And looking back on who I was when I was diagnosed I realize I have learned a lot, exerienced a lot. This isn't the trajectory in life I planned to take, but I have learned lessons I would otherwise have missed.

    But I did get to hike through Scotland on The West Highland Way with my best friend from high school wth our college age daughters. That was seriously cool! Maybe even cooler then Everest!

    NB--I'm from West Virginia in The States. I was the new kid in high school when I was reading about Scotland in the school library. This girl walks past, noted the book I was reading and sat down to talk. She was astonished I has even heard of The West Highland Way. She thought she was the only West Virginian who wanted to do that hike someday. We became great friends, and a few years ago we finally did the hike together, with our daughters who were the ages we had been when we had first promised each other we would do the hike together some day. . Again, way cooler then Everest.

    Gina

  • That's amazing! I don't know the limitations yet of what I can and cannot do. I've just begun my research but I have a feeling I'm going to shed some tears when i find out how limiting this disorder can be.

  • Wow, first off let me just say how grateful and genuinely delighted I am to have received responses from each and every one of you. Thank you so very much for the warm welcome. Instead of replying to each one individually I'll just summarize it all here in what I hope isn't too long of a response :)

    Let's start with the basics. I'm a 31 yr old hispanic female living in Central California. I've been married to my wonderful husband for 11 years and we have a gorgeous 9 year old son. BTW, any of you have trouble with infertility? I had tried for many years to get pregnant after my son and was never able to again. But, that's another story. I have the most fantastic, caring and compassionate doctor that I thank the good Lord everyday I was blessed to find. It wasn't always that way though. January of last year I went in for a regular physical with a doctor who I thought was fantastic at the time. But that was because I'd never had major issues to see him for. I had a feeling something was wrong because my heart would always feel as though it was about to race out of my chest. I was dx with high blood pressure that day. I was put on Losartan 25 mg. Fast forward to July, I was starting to feel chest pain, upper back pain, left arm pain, jaw pain. Thought I was having a heart attack. I went to the ER where I was immediately put on oxygen and I spent the entire night and half the next morning getting X-rays, an EKG, blood work, stress test, and having my heart monitored throughout the entire time. I was told it was just my blood pressure, no heart attack, no signs of ever having had one. Was put on a higher dose of Losartan and was given Metoprolol 50mg twice a day and Hydrochlorothiazide and told to also take an 80mg Aspirin to prevent heart attack. One month down the line, I still had the pain but now I had started getting heart palpitations, left leg pain and pain in both my hands. I returned to my doctor and told him that what I felt wasn't normal. He said and I quote "Seems like you have anxiety because of your high blood pressure and may be suffering from some carpal tunnel". He gave me anxiety pills that I never took cause I knew it wasn't anxiety and told to take tylenol for the pain in my hands and leg. I continued on with the pain until November, when the symptoms got strong again and I ended up in the ER where they did an EKG, X-ray and some blood work to make sure it wasn't a heart attack. I was told it was gastritis most likely from Thanksgiving dinner, then they sent me on my merry way. I had enough, I knew I wasn't getting anywhere. So I got home, I prayed for God to lead me to the right doctor, got online to search for a Cardiologists cause at the time I thought it was my heart and when I spoke to the office staff at the Cardiologist I called, they referred me to my current doctor. She's amazing. She has spent the last 9 months sending me to different specialists, running multiple tests on me and is always very optimistic. And yesterday she gave me my diagnosis which although I was sad to hear about, i was incredibly grateful to her for her dedication in trying to figure out what was wrong with me. I have an appointment in a couple weeks so that I can start treatment. I'm taking 81mg Aspirin for now. Like Nicolebarks said up above, I was relieved to know I wasn't going crazy and my symptoms were real and my doctor was always very good at telling me that she knew I wasn't crazy and always believed me 100% when I would tell her how I felt.

    Already I feel calmer knowing that I have a support group I can turn to when times get tough. I don't feel so alone in all of this. Again, thank you all for the warm welcome, I look forward in getting to know each one of you. God bless :)

  • take a deep breath and then thank God that you found this site, I wish that I could have accessed it 11 years ago when i was diagnosed. It has been my experiance that the most frightning thing with APS is not knowing what is going to happen next Healthwise, This of course is before it is pinpointed. As you have heard in other responses it affects each of us differently. I believe you are the first person I know of from cen. calif. besides myself who are members on this site. Calm down and take care, God keep you and yours safe Wedgeman OUT!

  • That's so awesome! I seriously never expected to find someone that lives in California, much less Central California. Thank you so much for your kind words and well wishes. Truth be told, I'm still afraid of what may happen. I've been researching and the more I research the more afraid I become. I suppose you're right, I have to calm down. I have tremendous faith and I know that regardless of what I may go through, God is always there to get me through it.

  • Welcome to the group.... I was diagnosed with APS and Lupus 6 years ago when I had a pulmanary embolism. I take warfarin and plaquenil. I feel for you... I remember those same feelings and to be honest everyonce in a while I get them all over again... I just don't let them last as long. My life has been easy compared to some so I count my blessings. Just incase you are interested there is a support group on Facebook too. I like not feeling alone in this...

  • Susie, thank you for your response. I feel the same as you do when you say you like not feeling alone in this. It's a little scary to think of all the things that can happen. Questions run through my head all day but the biggest question of all is, does it get any easier? I'm afraid that I will live being afraid. And I don't want to live that way.

  • Before my diagnosis by an out of town doc, my local GP told me I was having TIA symptoms because that one indisputable stroke I had had left me with a profound fear, and what I thought were more TIAs and mini strokes were actually " just" episodes of fear.

    My diagnosis of APS also engendered a complex palatte of emotions. One emotion, besides the sadness, was a bizarre happiness that I felt guilty about feeling. I was glad that I now had a diagnosis to shove, so to speak, in that GP's face who actually thought I was manufacturing mini stroke symptoms.

    And now as I hope for an answer for the debilitating hip pain ( over 2 years now,) I find myself feeling a guilty pleasure as I scan my blood work for signs of lupus. No, I don't want to have lupus. But I would like some validation.

    Gina

  • I've been seriously considering calling my old doctor and speaking to him about my diagnosis so that if he ever has a case like mine, he can take the proper steps. From what I've read, it seems that a lot of people have problems getting an APS diagnosis. I feel incredibly blessed to have such an amazing doctor now.

  • Hi Aid and welcome to the group.

    As others have said it is good that you have a diagnosis. Before I was diagnosed I was having so many symptoms and feeling so ill that I thought that i was going to die; getting the Dx was a big relief.

    I paid to see Prof Hughes privately and that was a good thing as we were able to try different levels of treatment until we found that Wafarin with an INR of around 4.0 was right for me and reduced my symptoms to manageable levles. However, after 7 years things started to change and I got lots of 'funny turns'. I went back to see Prof Hughes and I have now converted from Warfarin to Heparin shots and this has reduced my 'funny turns'.

    So, having been diagnosed you need to get the best advice possible and make sure that they put you on the best meds for you.

    Best wishes.

    Dave

  • Dave, thank you :)

    I've not started treatment as of yet. I was already taking an 81mg aspirin daily due to my high blood pressure and my doctor wants me to continue taking it until I see her in a couple weeks. I'm not sure how familiar my doctor is with APS, however she did diagnose me and she assured me that I will be receiving the best possible care. I trust her to give me the treatment that is best for me. I'm grateful for all the advice you and the others have given me. It's greatly appreciated :)

  • Hi there and welcome. Glad you found my blog useful and found us through it. I often wonder if anyone bothers to even read it but do hope it makes a difference to some.

    I sent you a PM on here I think and know that you have plenty of support here from so many of us.

    Every case is different and APS can be complex but the first thing to do is arm yourself with good docs and lots of knowledge of APS because many docs won't even know what it is. We hope to change that though and make it a well known word and condition.

    Ask away and let us know how we can support you best. We are here for you!

    PS I am in New Hampshire

    -Kristina

  • Kristina, I did read your PM and I'm grateful for your support and your blog. Your blog helped me find this site and I want you to know that I am eternally grateful for it. Thanks to you I don't feel so alone and I have a great support system. I spent the better part of my day yesterday reading your posts, and will continue to read it as you update. :)

    I've been doing some research, in fact, I will be taking a trip down to my local Barnes & Noble today to purchase a book by Triona Holden "Positive Options for Antiphospholipid Syndrome (APS): Self-Help and Treatment". I know I've barely grazed the tip of the iceberg in my research but I am dead set on finding out as much as I possibly can.

    Thank you Kristina, for making my journey with APS a little more easier.

    God Bless

    Adriana

  • Hi! Welcome to our special club of those with APS. I have had it for over 10 years. Learn everything you can about it - because the most of the doctors don't know and each will tell you something different. Look into vitamins, herbs, exercise and organic foods. As they say what doesn't kill you makes you stronger - with APS - it will make you tired!! And hey... you are NOT alone! 98% of us have gone thru what you went thru and are feeling what you feel.

    We are here for you!!

    debi in fl W APS

  • Debi, thank you!

    Ohhh special APS club! When you put it that way, I almost feel privileged! Lol I will continue with my research. That seems to be the most frequent advice I've been given. I've continued with my same exercise regimen as usual however, I'm not sure if I'm supposed to restrict myself from certain exercises. Organic foods is definitely something I will look into and I take a multivitamin daily. And you're right, APS does make you tired. Before being diagnosed I thought I was just not getting enough sleep, but now I know it's part of APS.

    Thank you for your support :)

    Adriana

  • Hello

    Glad to read that you have been diagnosed now.

    I am sure you will learn to pace yourself and cope with the fatigue (which for me is the worst part now)

    I know we all suffer to different degrees (good days bad days) but many of us are able to carry on pretty much as before aps (providing we pace ourselfs and do not over do things).

    Correct medication keeping my mind active and being busy works for me. (I self test my blood thickness INR)

    Good luck and hope you learn from other members postings on here.

    You are on the right track now!

    Regards

    Garry

  • Hello Garry,

    I think the worst part for me, apart from the fatigue, is the pain I get in different areas around my body. I do tend to overdo things sometimes so that may be the cause of my aches and pains. I'll take your advice and learn to pace myself.

    I've already begun to learn from you and the others, however, I know there is much more to learn.

    Thank you for your well wishes!

    Adriana

  • The only support I can give is to tell you how I deal with it - very young and scared for the future - but knowing and facing what you have is better armour than it being undetected and untreated. A lot of us on here are just so relieved to finally have a diagnosis after a long fight that being scared is an after thought and I really hope you havent been through too much of a journey to your diagnosis. To know what you ahve leaves you in a better positionand hopefully a cure in the future is on the horizon??!! take care xx

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