Please help!

Hello APS family.

How is everyone doing?

I am very happy to have found this forum, APS is so little recognize and so many people are not aware of it.

I need some help and some advice from you guys!

About two weeks ago I went to the ER, because of a scotoma on my left eye vision and some zig zag patterns on my peripheral vision. This was the 3rd time this happened to be in the last 6 years. However the ER doctor freaked out and called it a stroke.

After a series of tests such as...

Negative brain CT, negative brain MRI with and without contrast, negative neck MRI with and without contrast, negative echocardiogram, negative carotid ultrasound, negative ANA test. Normal ESR and SED rate tests. Regular PT and PTT tests. Negative lupus anticoagulant test. Normal CBC, normal red blood cells and normal platelets count... all that was left was the cardiolipin antibody test. I tested negative for the IGA and the IGG. But unfortunately tested positive for the IGM, tested positive at 15.3. At that point was told to follow up with a hematologist for possible APS syndrome. I have appointments with a hematologist and a rheumatologist this week, however the anxiety is driving me crazy. I have no history of blood clots and no miscarriages( never been pregnant) and after some research read that for APS it is only considered positive after 40 igm.

My question for you guys is, based on these facts. Do you guys think I might have APS?

Is it normal to have positive cardiolipin antibodies but not have APS?

If I test positive again around same levels in 12 weeks, does it mean I have APS ?

Should I be on any type of treatment till I get an answer in 12 weeks?

I am aware I have to re test in 12 weeks but that feels like such a long and anxious wait !

Please advice !

Thank you all!

6 Replies

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  • I think the best solution is for the Drs to make the diagnosis, they are the ones with knowledge, I had a positive ACA before I had my Pulmonary embolism. But was only put on warfarin afterwards. They have to treat the individual. And they treat each person as individuals. All the best with the follow up

  • Hi and welcome to our friendly site!

    Probably if you have Cardiolipin antibodies positive one more time you are diagnosed to have APS as you also have neurological symptoms. Do you also have family members (back in time perhaps) with suspisious symptoms from APS?

    What you can do when you wait, is to try Baby-Aspirin and see if it helps with the symptoms you describe above. I had those and got a low dose of Aspirin (75 - 100 mg - that is enough) and it helped with my symptoms. Afterwards (several years) I got worse and had to start Warfarin. Take it with your dinner. If it helps you must tell your Doctor that you have tried it and it helped with the symptoms, that is if he asks how you are.

    If you test positive (you also can be negative and have APS all the same). Talk about that later.

    If you test positive try to get a Specialist as we need a Doctor who is specialized in this illness. Very few doctors know about APS and that we have too thick blood that has to be thinned.

    Best wishes from Kerstin in Stockholm

  • I agree with Kerstin . You can be diagnosed with APS with neurological problems. That has been my case as I haven't had history of clots or stroke etc.Mind you my readings were high at 80.

    Best thing is try and keep calm and wait for doctors to assess you. I know it's scary as I have been through that screaming in my head. It may be nothing but take the aspirin as a preventative .

    We are always here to talk

  • Hi, did they do the other two tests also? If not I can list them for you, Kerstin has given you some great advice so far, be aware often people find other family members have autoimmune diseases, (past and present members), and or a history of miscarriages or strokes and heart attacks at an early age. MaryF

  • When you have your appointment this week you should ask them to also test you for the other Hughes antibody anti-B2GP1. Also ask them if they think you should be taking a baby aspirin while you wait for the second set of tests to be done.

    Do you have any other symptoms besides what you have already described? Like migraines, balance problems, cognitive issues or any issues of any funny turns? Do you have the mottled skin rash or any other autoimmune conditions or are there any in your family?

    We can't tell you from this one instance if you have this disease, I know it's frustrating. Many of us have had symptoms for years before we eventually got a diagnosis with or without positive blood test results. The above 40 seems to be something that is only adopted by some Dr's but may well be considered more if it is the only positive with little symptoms as blood tests can be raised for other reasons non APS related.

  • Hi there textra 88,

    I cannot tell you if you have APS or not however, my first symptoms were like yours and were attributed to migraine which I had not had before. I went on to have a blood clot about 6 to 9 months later. I am now diagnosed positive APS and with some dry eye symptoms too. The thing is once treatment for blood thinning commenced all the other vision problems ceased. So I would definitely take a small aspirin each day for the few weeks whilst you are waiting

    ( cant see that it could do any harm and would protect you during the wait to some degree)

    Anyone else agree?

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