Diagnosed

Just got home after 6 days in hospital from my second DVT. They have finally diagnosed me with sero negative Hughes. At the moment I am on warfrin and clexane injections with a GP appointment this afternoon. It has taken 8 months and for me to be in hospital again for them to take me seriously.

I'm worried about being able to have children, going back to work and putting pressure on my loved ones. If anyone has any advise on what happens and how to deal with things positively I would love to know.

Glad to know there is a group of people out there that understand how I feel as right now I feel very alone.

8 Replies

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  • Hello and welcome

    Firstly, yes you can have children, and to get a diagnosis when seronegative is twice as hard, and often in the first place so many of us have sheer hell being listened to. With this correct assessment you will have the best chance ever of having children safely and having access to the correct expertise and medication

    Some people take a variety of drugs in including 'plaquenil' for fatigue alongside the other medications. Lots of people on here will help you with advise and support and your confidence will come back.

    Sending you best wishes. Mary F x

  • HI MJ -- great advise from Mary as usual-- you have already got a big positive start. and that in it self is a big step. it sounds you are a young lady with a whole life ahead of you so live it -love it and go after this family you want hon------------------------ jet

  • Ahh! please dont feel alone, we are all here for you and you will be surprised just how many of us there are just like you. I was also seronegative and took me a long time to get a diagnosis but I have had two healthy children despite a few mishaps in that department along the way. I did not have the benefit of the knowledge and care that you can now get which of course you will have so please try and remember that you have now got the rest of your life to look forward to and things will now hopefully fall into place.

    I know its all new and a lot to take in but as the others have said we are all here to help and support you whenever you need it. x

  • Welcome to our family of Hughies, we will give you any advice & an ear to bash as much as possible between us :)

    Please dont feel alone anymore, we have all been there & it's such a relief to know there are others to talk to.........these sites are a blessing to us all.............

    We are not doctors but we will give help to the best of our knowledge or send you in the right direction if we cant.

    We probably all had a hard time being listened to in the beginning......& still struggle with A+E & docs now!! but we are a very stubborn breed that will not just lie down & say 'ok....you know best!!' not when we know otherwise on our bodies..........

    Eventually you will feel you can find the strength to do what it is you want to, it may be hard at times & some things you may have to adapt around a little differently (we are all different in the levels of ability)

    You can also have children with the support of understandin docs..........it is up to you what you can do.......just go for it.....you only live once, dont let Hughes stand in your way.......

    Here if/when you need us, Sue xx

  • Thank you for commenting back. Great to hear from other people that know how I feel. Are there meetings/ groups that meet up as I would love to go?

    I have been reading the other blogs and some people are fantastic they way they are dealing with things.

    Hopefully from talking to other people I will find the strength to get better and deal with whatever life throws my way.

    MJ x

  • :-D

  • Before I was diagnosed with APS and without any blood thinners I had 5 MC's and a ectopic pregnancy but also a full term baby girl who has just turned thirteen yesterday. Imagine what can be possible with a diagnoses and anticoagulants..set your sights high. I am living proof that miracles do happen x

  • Hi MJ.

    I too am fairly new here and found so many wonderful people who understand us and offer great advice and lots of support.

    If it weren't for this site, I wouldn't have found a doctor that treats APS in my area. I felt very alone too as no one could see me on the inside where the pain is. While its great to not look sick on the outside, it's difficult to be taken seriously. Now that you have been diagnosed, you can have the treatment you need. I feel that getting diagnosed is a big part of the battle.

    All the best to you!

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