APS Testing question

Hi all,

Have been diagnosed with Hemiplegia Migraines and my Neurologist is now telling me to see a hematologist to have further testing. Thank you to Lynn and other members for responding to me previously with very valuable data and also the name of a APS doctor near me in Northern KY. (Dr. Winkleman) I will be reaching out to his office tomorrow. My question for you is that I do need further testing. Presently I have been told the following:

LUPUS ANTICOAGULANT AND ANTIPHOSPHOLIPID ANTIBODY TESTING

single phospholipid-dependent assay is positive The IgG, IgM and IgA

anticardiolipin antibody titers were all negative.

The laboratory findings are

indeterminate, but a lupus anticoagulant should can not might excluded. Suggest rechecking a lupus anticoagulant panel on a new

specimen in 12 weeks to evaluate further.

My symptoms are the following:

1) horrible migraines w/aura (hemiplegic)seizures

2) problem pregnancies

3) Factor V Leiden

4) Fibro

5) Thyroid Disorder

Can you be positive for APS with this blood work? Has anyone out there had similar results? We are going to be looking into other past blood work to see if I have been tested for this before.

Any feedback would be extremely welcomed as I have been suffering now for over 4 plus years and my present medications are not working at all. My pain levels due to headaches are horrible!

Thanks so

4 Replies

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  • As has been said on this forum many times, you can be seronegative for APS but still have Hughes Syndrome (APS). The symptoms you have and associated conditions often go along with APS so it is good that they are continuing to look for a diagnosis. BUT they should not rely on blood tests only. They should look at the whole picture including all of your symptoms which is why it is critical that you see a APS specialist who sees lots of APS patients and will be confident in making a dx in a seronegative patient and then treating them appropriately.

    Please listen to Prof Rahman's lecture on the Patient Day audio which I have just posted on here. It is the 3rd lecture and starts at around 34mins into the recording and explains this subject exactly. I think you will find it helpful. xx

  • Thanks so much! This really gives me the kind of support I need to push forward! I did watch the video from Patient Day of Dr. Hughes speaking about APS in 2050, but I can't seem to find the link to Prof. Rahmans' lecture that you speak of that I would really like to watch. Is there anyway you could forward me the link so that I could view the link? Thanks again! xx

  • All you need to do is go to the "Home" page above on the red line and then look on Hughes Syndrome Community Blogs for the Patients Day 2013 Audio Recording.

    Here is the link anyway:

    hughes-syndrome.healthunloc...

  • Hang in there with those terrible headaches! Sounds like you have a good plan in place and will get some answers soon!

    What type of treatment have you been on for the headaches?

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