Scared to be diagnosed...scared to be undiagnosed :-(

This APS possibility is really niggling at my mind lately....I'm having ups and downs of 'youre a hypochondriac your bloods are normal they've told you already' and then 'what if they really have missed it and I need to be on warfarin' and then WARFARIN!!! do I even want to be diagnosed, am I asking for a life sentence here? Looking for trouble in some way?!! I'm quite scared if I'm honest....what are the implications of being diagnosed....from a personal point of view...from real life people?.... I'm worried I'm being silly and that I'm overreacting thinking there could be something wrong with me :-(

Did anyone else feel like I do?

24 Replies

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  • Hi.

    Don't be scared. You are going to the right place and they will be supportive and caring. They will get to the bottom of this, if my experiences there are anything to go on. If you have APS it is much better and safer to be diagnosed and treated. I'm sure others on here will tell you the same.

    Dave

  • Thanks Dave, it's a bit like 'careful what you wish for'... Not that I want to have APS, just that I want a yes or no....so I can relax a little. But a diagnosis would also be a whole other ball game. You're right though, but I'm a born worrier. Thanks x

  • Me too but I was getting such weird things happening to me before I was diagnosed that it was such a relief to have a Dx and start on treatment that made me feel better.

    Best wishes Dave xx

  • Good luck with your tests. Have you been tested properly?

    healthunlocked.com/hughes-s...

  • I have had tests by my local rheumatologist which came back 1st one igm 9.9 the rest normal, 2nd bloods about 2 month later came back igg 10.7 the rest normal.....they think this is a negative result.....after looking on the Hughes site I believe these are mildly positive in St Thomas' lab? I have had one miscarriage at 10 weeks which ended up an extremely long drawn out process....my first child had fetal growth restriction in the womb ...then I was diagnosed hypothyroid....I have lived with memory loss and brain fog for years along with heart palpitations ...then last year I had a central retinal vein occlusion which has triggered all this concern...I have an appointment to see Prof Khamashta in a fortnight or so....the little things I have linked together are things I would have never went to my doctor about as alone they seem so non descript xx

  • I don't think your overreacting at all. Blood clots are a serious issue! My first haematologist after I'd had 4 clots in two years including a or wanted me to stop warfarin due to it's risks but I was not comfortable with not being on warfarin! It was like a dammed if I do dammed if I don't! I have since seen two more specialists who have diagnosed me with aps and now prob on warfarin for life. I'd rather know and act. I get worried allot. Worried about clotting worried bout haemorrhaging ;-( it's understandable what your thinking

  • Hi there.

    I rarely write here, but your post struck a chord with me, so here goes. I'm guessing most people here have been thru what you are feeling now, so don't panic. I was diagnosed about 15 years ago and I STILL wonder if I'm just a hypochondriac!

    Knowing is far better than not knowing, as once you know, you can arm yourself for the consequences. APS does not need to define you. In my opinion, it's just one more thing in life that has to be dealt with. There IS life after a diagnosis with APS.

    As for the dreaded warfarin - the way I see it is if it helps, by reducing symptoms and improving quality of life, then it's to be welcomed, not feared. Quite the opposite of a life sentence, in a way. More a key for a new improved life to begin.

    Hope that helps just a bit.

    Caroline

  • We have a saying 'knowledge is power'. Many APS patients have had very similar experience to you. I battled for years with this illness and the 'brain fog' II suffered was crippling.

    When I was finally diagnosed by MK my sister and I went straight to the champagne bar at St. Pancras and celebrated the fact that the long years of battling doubting Doctors was over.

    Your feelings are natural and most of us experienced them and got through them, you will too.

    Xxx

  • Thankyou all, I think it's because I don't have as debilitating symptoms as a lot of you....it makes me doubt my own suspicions...and when I had the clot.in my eye they all banged on about how rare it was but I wasn't treated in any way...so it made me think it was a minor thing because it wasn't a DATE or PE.??..however I could have realistically lost my sight in the be all end all. They told me to have a mirena coil removed, when I queried this with my gynae though, she was quite forthcoming in saying she didn't believe my coil could have caused the retinal clot , the GP also said the same.....I just cant live in peace with 'hmmm, could be...' but I do feel like a whinger when all of you have such awful symptoms. xx

  • Hi JP83

    I have just been diagnosed with APS after really knowing that I have had it for years but only being told I had sticky blood. I have been on Warfarin for over 10 years after recurrent DVT's. It was an enormous relief knowing that I actually had it to be honest as I was constantly feeling as if I was just another hypochondriac!! and now I know I can get on with my life, all the symptoms that I have are minor really and the worst for me is probably the brain fog effect and the forgetfulness but my husband is fantastic and we laugh at my forgetfulness although he probably gets extremely frustrated with me!! I cried when I was given the diagnoses at London Bridge hospital but it was tears of relief just knowing that I am not mad just a bit loopy which is fine with me!! At least I have an excuse when I can't find my glasses! Even though I know I have put them somewhere safe!

    And like you I feel a bit of a fraud on here as there are so many with far worse symptoms but we all have one thing in common APS. So good luck.

  • Thank you Molly, I expect if I get the diagnosis I will have a few tears, and they will be relief...because I will be able to be confident I'm not mad as a March hare when I go into my funny 'zones' i get.and the 'out of body's feeling when your head goes on one..the brain fog.. and lack of memory, sometimes I really have to think hard about what I did yesterday or where I've been....I know that I've done it etc just have to really concentrate on when/what day....I remember numbers like a phonebook however. It's strange. Xxx

  • We were all as new to APS as you once. So you aren't a whinger!

    I have experience of the Mirena coil. Mine was fitted a couple of years ago, on recommendation from buth my APS & Lupus Consultants. Heavy blood loss during menstral cycle was making life hard work. I've had no problems resulting from the coil in four years.

    With respect,

    Sue

  • Hi again JP83,

    First of all I agree with what the others above have said. It is understandable what you are going through!

    The worst thing that can happen is if it is not controlled. It can begin very "light" but during the years it get worse and can damage organs within your body. So warfarin or what ever you get is like a gift from God.

    I am so glad that you are seeing this wonderful doctor and see London (I have never been there).

    When I had read "Sticky blood Explained" by Kay Thackray who got her eyesight back I understood that I had to do what the doctors had said for some time and that was to start Warfarin.

    For her warfarin was a new life so to say without clots and so on. I was so lucky that it worked for me too. A miracle! When you are anticoagulated you can feel "safe"!

    .

    A big hugh to you from Kerstin in Stockholm

  • Kerstin you have a lovely 'manner' in your replies, as I have recieved from all of you lovely people who have taken the time to respond. I'm sure you all hear the same thing from people like myself who have so many questions time and time again, thank you xxx

  • Possibly my Swedish "manner" is taking over. I hope you can understand what I write because I am not used to write in English. I hope you mean something positive with "manner" as I do indeed.

    Kerstin

  • I certainly do mean positive Kerstin, by manner I simply mean I can sense your warm personality coming through in your posts. I can understand you well, you are very kind thankyou again xxx

  • Until around 2001 I had never heard of Hughes Syndrome/ Antiphospholipid Syndrome. I knew that for the 30 or so previous years I had something pretty wrong with me but I thought much of it may have been imagined. Then I was told that the Lupus anticoagulant I as it had been called was now called Hughes and I found the Hughes Syndrome Foundation. The relief that I had when I saw that all my symptoms were typical was immense. I would rather not have had Hughes to be diagnosed with it- but as I do I have found the confirmation much the better option. Best wishes.

  • Yes as all the others say we would all rather not have Hughes Syndrome - that is only natural :-D But it is much better to know for sure - better the enemy you know and all that! For years I fought to tell Doctors I had something wrong and you get to the point where you long for a test to come back with something wrong with it so you can almost shout back at someone, I TOLD YOU SO! Unfortunately for me it came too late in the form of a Stroke, so I always urge people , especially those with unequivocal test results to just keep going if they want answers. You won't regret it and Prof Khamashta is lovely - you will get a big hug! Hang in there till then. x

  • Yes, and so useful to see that in writing out there some great information on Seronegative Hughes Syndrome... although of course many go on to pass a test anyway. jautoimdis.com/content/6/1/3 I had a very very interesting conversation a few months ago with a medical consultant in a social setting, along the lines of has the art of patient history taking and examination gone, he felt it had, and that this was a very bad thing! I explained in detail the difficulty some of our members were having. MaryF x

  • I think the way you are feeling is perfectly natural. It is a curse, but there is two options.....one, to give up and take the pills, and be thankful you are having it managed. AND then there is the second option; Pick up the bits and move forward positively,...now diagnosed and on drugs, it is daunting, but as everyone says, you are being managed, and although there are a lot of unknowns, there is always this forum, with lots of help, understanding, sympathy and information. Using all of this it is possible to move on, and get a normal life thing going....I was diagnosed in 2002, and have had a lot of ups and downs, but managed to set up and run a successful business. That gave me focus, and with family and all the friends and contacts here, all the support I could ever want. Be positive, swallow the negative, and then take the positive, and prove to yourself that this will not beat you. Everyone is here for you, and will always be......with that and your warfarin, and some time you will be successful. Hang on in there

  • Hi, sorry to read your worries. I really am. I have APS & Lupus. A DVT led to diagnosis of both. When I was told signs of my symptoms went as far as youth I was horrifed. I'd had major organ failure the year prior to diagnosis as well.

    Yes, I know, it does sound awful, medications for life. But if you are diagnosed and need warfarin although not what any of us would choose, it will be necessary for a very good reason. You are that reason. And your health matters. My anticoagulation team helped me ease into life with warfarin. I currently take 11mg per day, and test as required from home using my own test machine. Before this a blood test at my surgery led to the result passed to me by phone. Currently I email my result to my Anticoagulation nurse. And I was, as now, told to amend, or stay on the dose required.

    This all sounds very clinical but, if your body needs it, it will become a part of your life, but no more than checking how many biscuits are left in that pot, should I buy more?

    I'm 46 years old, female, and although tend to limp (problems with ankle due to Lupus damage) slightly, look so fit my friends laugh at the multitude of medications I swallow each day.

    Your diet may need amending, excerise and some daily habits but believe me, please, you will still be you. And you are very important.

    Your worries are real, but you wont be alone.

    Take care please,

    Sue

  • I have just returned from having an MRI on my brain as requested by my rheumatologist to check for signs of connective tissue disease/lupus. She seems quite thorough but hasn't made a link between my blood results on any occasion which seems a little weird if she's supposed to know her stuff? Anyway...I was a little nervous...for no apparent reason....other than being enclosed and of the unknown....I managed it without panicking however which is good for me...but I sadly cowarded out of having the dye injection as I knew if it made me feel even slightly funny I would have a panic attack and then there'd be no results at all because I wouldn't be able to endure it. Chuffed that I managed it at all though. Oh, and the earphones they give you..

    ...useless. Ha ha xx Thankyou all for your positivity and lovely kind words, it's heart warming to know that a stranger who doesn't know who you are or what kind of person you are, can spend a moment of their day to think of you...thanks... all of you xxx

  • jp83 I have just been reading all this and notice that one thing you say is you don't have all the awful symptoms some of the others suffer. My husband (the one with APS) had absolutely no symptoms until he got a DVT for no reason. He then had blood work done (thankfully we had a switched on Dr). He was put on Warfarin for 6 months, then taken off and our Dr re ran the blood tests. It was then that he had his diagnosis confirmed, very high IgG and Lupus Anticoagulant (off the charts high).

    For 2 years he was on Warfarin with no symptoms and no knowledge of what he actually had except for the name. We were never told anything except that the Warfarin should stop him getting another clot.

    Symptoms don't always show themselves, it doesn't mean you don't have a serious condition, just that you are lucky.

    Education about this condition is vital for you as your Dr's don't always have the knowledge. Our lack of knowledge of this condition almost cost Derek his life.

    Diagnosis and knowledge are the two key things for managing this condition, and this and the Hughs Website are the best places to get that information.

    Good luck with your diagnosis.

  • Just to let you all know I saw Prof K this week and my bloods are now showing positive for APS and positive for Lupus... But he is repeating them to be absolutely sure and confirm.

    I've posted a new question in the forum if anyone would care to comment.... Again thank you all so much xxx

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