Awaiting my last blood test!!

Hello, I am a 31 year old mother of 3 handsome young boys. I suffered a mini stroke on January 6,2012. At first I went to doctor upon doctor and was told they thought I had everything. I saw my neurologist who diagnosed my mini stroke and she also ordered blood tests. I got a call that something was wrong with my blood. I now regularly see a hematologist who was explaining APS to me. I was informed that I needed 3 positive test results to say I have it and 3 negative results to say I don't. I currently have 2 positives. The doctors are pretty sure I have it. I saw my hematologist just yesterday. She performed the ANA test to check for lupus coagulant. I am currently awaiting results(which should be Friday) I have been feeling very sick lately. I have mixed emotions because I have a disorder that many people have never even heard of, but on the other hand I am happy to finally get answers to what happened. I would like to talk with others who are going through the same thing as I am. Thank you!!

18 Replies

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  • Hi hon

    Welcome and glad you found us. Sorry to hear what brings you here.

    Sounds like you have a great and on the ball haematologist. Glad you have them on side.

    It does appear from your test results so far that you do have our lovely Aps/Hughes syndrome.

    The confusingly named lupus anticoagulant is a further indicator of Aps, my diagnosis is LA positive Aps etc. The ANA test is an indicator of rheumatological disorders, including Aps.

    I'm sure you'lle find the help, support and answers here, their are some lovely people on here who understand and care.

    For further information take a look at Hughes syndrome foundation website on hughes-syndrome.org, a great site that gives the facts.

    Take care gentle hugs love sheena xxxxxxx :-) :-) :-)

  • Hello there

    Firstly big hugs for what you have been through with the stroke. Sounds like you are nearly diagnosed, which can be a relief as you can get to know what you are coping with and understand it better.

    I am 40 and had a pulmonary embolism in dec 2009, I have been diagnosed with APS. As sheena said, do have a look at the website she gave you, so you can learn more about it.

    And keep in touch on the forum and let us know the 3rd result

    Big hugs and nice to meet you on here!

    Love

    Sara xxx

  • Hi there,

    I also had a stroke in 2006. I was diagnosed with APS like yourself and like yourself I realised that it was a little known illness, especially by non medical and a lot of GP's! I feel much better now and warfarin was the miracle drug that has helped. Welcome to our happy band, one of the things you will realise is that you are not alone and we are all here for the same or similar reasons. God Bless and enjoy your children, I am sure you will feel better when you get a positive diagnosis and you are treated. Much love and xxx MaryH

  • Welcome I hope you find us all useful and supportive. The first thing i will tell you is that many people on here are what is called 'seronegative' hughes. We just do not show up all the time in the clinical tests, but nevertheless have had one or more or several clinical incidents and also the correct history to go with it. Just keep asking questions, or reading through past blogs, and also the very useful information and papers on the Hughes Syndrome Site itself. Best wishes to you. Mary F

  • Thanks to everyone for responding. It is great to have the support system from others who share the same problems as me. Thanks for being loving and caring to people you don't even know!!

    Love,

    Tracey

  • Hi tracey

    You welcome hon. I hope we can help.

    Take care gentle hugs love sheena xxxxxxx :-) :-) :-)

  • hi hun,

    yep I think we all get that mixed feeling :( no we dont want them to find anything.....but on the other hand you want to know there is something to blame with whats been going on!

    I too was found with APS when I was 31....I am now 41.

    Glad you found us on here, let us know what your results go either way.

    Hope you are ok,

    Sue x

  • Hi tandtsmith

    Welcome to the group, you are more than welcome here and please ask away we have all been where you are where you sit there and go great and answwr but nobody give you staright answers we happy to help.

    Paddy

  • Hello Tracey, Sorry to hear about your mini stroke. I hope you are feeling better now. I had a stroke a year ago and then was dx with APS in August and I am one of the seronegative people Mary talks about!!

    I joined HFS and got loads of info from them and feel a lot more comfortable now I understand things better.

    This is a great place to come when you need support and questions answering too.

    Hope you get on ok tomorrow.

  • Hello,

    So sorry to hear that you may have Hughes Syndrome but you have found an excellent support group of fellow sufferers.

    Hughes Syndrome is not as uncommon as we are led to believe but it is often misdiagnosed or not diagnosed at all.

    It is very reassuring that your Haematologist knows about the illness and will be able to give you the correct treatment.

    It is scary to learn that you have an illness that you and others around you haven't heard of but we have a saying here 'Power is knowledge'.

    Please let us know how you get on with your next appointment and be reassured that you are not alone.

    Kind regards Sue

  • Wow upon reading your statement I thought maybe I typed it and forgot! Lol your story is eerily similar to my own. I am 30 and I have 3 handsome young boys and I had a stroke in January! Lol see what I mean very very similar! My story is a little different though. I have known I had hughes since I was pregnant with my middle son and I had many many complications so its safe to say no more kids for me! Although if i safely had a choice i desperately wanted and would try one more time. But i figure i will quit while i am ahead because my 3rd son about costed me my life and although he is worth anything i also know my boys need their momma! The problem was my docs told me unless pregnant i wouldnt have any problems with my hughes until i was way older so i didnt need constant care. Boy were they wrong!!! I will pray for you because i know how hard it is to constantly be exhausted and in pain with 3 little boys! Good luck sry about the length of this!

  • Hello Dawn!!thanks for responding. since my blog post, i am officially an APS patient. i am currently on lovenox injections and warafin. I had many complications with my pregnancies but no body ever diagnosed me with hughes at that time. 2 of my children were premature. one was 33 weeks and another was 34 weeks. There have been times where I have wanted to give up, because of the constant exhaustion and pain. My boys also need their mama!! It is amazing how similar our stories are. I will pray for you also. Keep in touch with me, we can be each other's support system:))

  • Thanks to all who have responded, it is official, I have Hughes. I am currently on lovenox injections and warafin. Thanks for all of the help!!!

  • Good at least you have an answer! I was on lovenox for a long time and one thing you need to know that the drs didnt tell me is it sucks calcium from your bones so hopefully you wont be on it long enough to do too much damage! If you dont mind my asking where do you live? I am in the States and I live in North Carolina? Now the problem will be finding ANY dr with true knowledge of Hughes! They know its sticky blood but thats the extent of their understanding they dont understand the odd ball symptoms and severe pain! Most docs around here have never even heard of it! Good luck and thank you I need all the prayers I can get! How old are your boys? I read your story out loud to my husband and even he was shocked at the similarities!

  • Hello, Dawn. I also live in the states, I am in Monticello New York. I can't stand the lovenox injections, I have bruises all over my stomach from them. I have 10 more days left of injections. I started them on March 7th and I finish the 22nd i think. The doctors don't know much about it or understand the pain and weakness that's associated with it.My job wants me to come back to work and i need to. i'm hoping that the meds will work through my system and i'll feel better.It's nice to talk to someone who is going through the same as me. if u need any support i'm here for you and anyone else that needs it!! The 21st i see my rhematologist. she took blood from me cause she thinks i have other issues along with APS.

  • I am glad that you finally have an answer that is half the battle.

    Paddy

  • Thanks, it took a long time to get results, but I'm glad I finally found out. Thanks to everyone for their support.

  • Thanks for everyone's help. I appreciate it. Hugs to everyone!!

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