Feeling very low. Had results from another APS test and it's come back negative and now they are saying that my origanal positive tests were only 7 weeks apart and they only look at ones 12 weeks apart and people with 3 or more miscarriages (which i have had!). I've put off the next cycle of ICSI ivf go 8 until we find out what going on. Not sure what to do as i was told i had Hughes and now someone says it's not that cut and dry!

7 Replies

  • Are you on meds that can affect results? Are there more sensitive tests that can be done? Don't give up, and trust your gut on this- keep seeking answers on this!

  • Kristina is right trust you gut - I am sorry that you've had such a hard time but keep pushing and they will find an answer. I hope you read something on this site that you can relate to that may help.

    Take Care Tx

  • Hi there

    If you read some of Prof Hughes past blogs you will notice that he writes alot about people who have negative tests or boderline results. My diagnosis was based on clinical findings, thrombolin (or something like that) and a weak positive test, now I have MRI results that show up more positive stuff. Prof Hughes is concerned that current tests may not be picking up everybody with APS so like Tasch and Kristina say, trust your instincts the answer is there somwhere.

    Love Sharon x

  • As the others say many people are negative. I was negative on ALL my tests over many years despite having every single clinical symptom. Prof Hughes says that they just dont have the science right yet on the tests and he is seeing more and more people with negative results who do have Hughes. I think we are called seronegative!

    Dont give up Hana, I would rather er on the side of having Hughes than not frankly because if I dont treat for it the consequences could be...well, devastating! Hang in there!

  • Hi hanna

    I too had the yes it is, no it isn't merry go round. Does your head in cos you know your own body and that something wrong. I went from specialist to specialist then finally to st t's were they said yes on basis of clinical findings, then later 2nd positive lupus anticoagulant and 2nd positive ana. So definately Hughes. But i only tested positive once for anticardiolipins. Local rheumy wouldn't have a clue how to interpret this cos I'm weird and always have to be different.

    Keep pushing hon, i had fertility issues, miscarriages and managed somehow to have 3 fantastic children. My miracles!!! Agains't all the odds!!

    Take care gentle hugs love Jessielou x x x x

  • Gosh girls i'm so glad you have emailed me so i now i'm not going insane, i will emails back after this weekend as i'm just getting ready for my guests coming xxxxxx

  • Hi hanna

    How are you? Hope all well!

    Take care hon. Gentle hugs Jessielou xxx :-) :-) :-) xxx

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