Awaiting blood tests impatiently

Long story short, my sister, mother and aunt on my father's side ( I know weird huh) all have APS. I finally had my testing done on Friday (I'm in the US and I had to order my own labs and pay for them due to lack of insurance). I'm waiting the results. I'm scared of them being negative and me just being crazy. I had 5 succesful pregnancies ( the last two had major subchorionic hematomas, then had two still births back to back at 5 months along. I had a er dr tell me I needed to be checked for APS but my Dr wouldn't test me. I on my own took a 81 mg aspirin day and night while pregnant with my daughter and she was carried full term. I got pregnant after that and did not take my aspirin (I was convinced I was ok) I lost that one at 13 weeks. All of my losses were healthy babies just the placenta clotted off. I have lots of neuro symptoms, gastrointestinal, insomnia, nerve pain, headaches etc etc. My Mother is a hypochondriac and I've spent my life terrified that I will be like her. I really hope my tests show something is wrong otherwise I just feel defeated and crazy. So I am hanging out with people who will not think I'm crazy till these stupid results come in. I'm scared to see them. What if they are negative, what if they are positive... either way is blah! Thanks sorry if I'm rambling.


Waiting impatiently in the US

14 Replies

  • I know exactly how you feel! I have a diagnosis of APS but still have negative tests! I have had one positive lupus anticoagulant but it's not shown since. I have been diagnosed on symptoms but I still feel crazy.

    Sorry about your losses - I've been there as well x

    You're not alone - we can be crazy sick people together :-) x

    Hope the wait for results isn't to long x

  • Hi I'm from USA too! What part of USA as u need an APS specialist! Don't be scared, it's not being diagnosed that's scarey! I was DX'd in October, but shudve been a long time ago! Good luck and keep in touch

  • So good that you have put yourself on Aspirin low dose and also probably got your baby because of that!

    Do your sister have an APS-Specialist you can call? With this illness we need an Expert. That is a fact! He/she knows what to look for regarding all of the different symptoms we have.

    I wish you good luck and you have already heard from two women who knows a lot.

    Read also "Sticky Blood Explained" by Kay Thackray. It is not the last oral drugs in it but Kay has APS herself and writes about the different symptoms. Also good for relatives to read to understand how it is to live with this illness.

    You are not mad!

    Best wishes from Kerstin in Stockholm

  • My sister is using a Good Rhuematologist but I don't think she is being managed well with APS. I'm in the Houston Region in TX. I've gotten some of my blood tests back, not my APS tests just my basic blood tests but my Hemoglobin, MCV, MCH, MCHC were all low and my RDW was high, as was my BUN/Creatinine it was high as well. Any clues what that means while I wait for my APS results?

  • We are not medical trained here so we can not give you the answers you need. Ask for a copy and also ask the Doctor who took them to explain them to you so you understand it.

    I wish you and your sister and also daughter (do not know how old she is) could see a Specialist. Perhaps your mother is not a hypochondriac (many of us feel like that when talking to people who do not understand APS) but has also got APS. Just a thought. May not be true at all.

    I wish you good luck and hope someone who lives near Houston Region in Texas could help you further!


  • hi from Colorado! I also have a mother who is a hypochondriac...and I am petrified that I will be like her so I go the other way and down play my own issues! I was dx'ed with APS in 2001 after the birth and death of my 3rd child and micro clots in hands that were not found only assumed. Was put on and off warfarin, aspirin and heparin. I was un-diagnosed in 2009 after not producing a clot in a timely manner for the Hematologist! LOL! I was told that I have the APS antibodies but I don't produce clots so I am all good...bye! HA, in 2014 I got to experience a HUGE DVT was put on Xeralto...then got to have a PE. Now on warfarin and doing better...still have APS symptoms but no clots! YAY?

    Hang in there...I find that reading up on APS helps me feel like I am not crazy and I can deal with things a little better knowing I am not alone! (Thank you forum!)

    Monica :}

  • Monica - Please try and find yourself an APS specialist! Dr Ekran sounds like a good bet even if you have to travel and then get local people on board with his advice.

  • Dr. ERKAN is in NYC AThispital for special surgery! He's very good and I'm sure he cud get to the bottom of this for you! Houston is big tho and should have APS specialist somewhere! Also you may want to call Dr.,Erkans office, he's very helpful and may know someone in Houston area! He's very up on research and may be able to send you in the right direction!!! He's a very humble man! Good luck! It's only a suggestion, but may pan out for you! I have his info if you need it!!! I'm from Long Island, New York! GODSPEED

  • my current hematologist (not the goober one) is doing ok...he says has about 70 APS patients and that I am one of the more stable(APS-wise) patients he has. AND he is just about 45 minutes away! Dr Ekran sounds awesome...would love to talk to such an expert but he is about 1500 miles away from my home! thanks though! :)

  • Monica,

    I wonder it you still have that Doctor who "un-diagnosed" you in 2009? Is that Doctor having 70 APS-patients and also said to be an Expert of APS?

    If this is true you just must get yourself an APS--Specialist. Get away from that man!! I know people in Sweden who have travelled to England to see prof Hughes. I think you life is worth having an Expert!

    Best wishes from Kerstin in Stockholm

  • oh no, Kerstin, I have a different hematologist now. I don't know if he is labeled an expert?

  • By the way we all thought my poor Mom was a hypochondriac too, but with her history of so many miscarriages b4 my sis and I , plus all her blood clots in early 40's, all her unusual aches and pains, I'm sure she had APS AND that's y my sis and I have it? Have your Moms tested too!!!

  • oh my mom has some very legit health problems; fibro, fused vertebrae, bi-polar disorder....addiction to surgery...but she does not have APS! She got miffed when I told my sisters and daughter to be tested because if APS were hereditary...she would have it! LOL! :|

  • Awe so sorry to hear that! Having bipolar disorder is difficult to take in itself! I know it how difficult bipolar can be to deal with! I wish you best of luck! Godspeed!!!

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