My first beta 2 glycoprotein test was positive, then a week later was positive, but now 12 weeks later its negative. I can pay privately and get tested...do you think I should? As it could possibly be a lab error? At the 1st time of testing I had no infections etc that could have interfered.
On one hand im happy its come back as that but on the other hand I thought I finally found what was making me feel so ill. I seem to fit so many of the symptoms I got no explanation for.
Hi Charts,
What is your understanding of the testing process? How has your doctor explained it to you?
How has your treating doctor explained their particular testing intervals to you, for your particular situation, or was it more that one doctor involved with different specialisms and the testings overlapped?
Just found out the receptionist got it wrong and the one test is actually positive! The cardiolipin was negative but the beta 2 glycoprotein was positive. I just don't know what to do next as I'm feeling really unwell.
It’s very important that you see a rheumatologist or hematologist that understands APS.
Specialists in APS are vital.
I actually had a letter come through today to see a rheumatologist next month, but I'm not sure what he actually knows about aps. I really don't think most rheumatologist are going to connect my neurological symptoms to aps. Like what look like seizures, tics etc.
A rheumatologist who is very familiar with APS will be well aware of its neurological implications. If they are not, then that may be the time to pay privately.
If you are in the UK ( sorry, not sure where you are) it could be worth seeing a specialist at London lupus centre, for example. Often times they can suggest specialists in neurology , etc for you to be referred to.
Also, it’s sometimes the case you can be then put on the NHS clinic for the same doctor once you’ve seen them privately.
Make sure you get copies of all of your blood test results. I have been told a couple of times that things are normal only to find there are abnormalities when i have looked at the hard copies.I keep everything in a folder, take it with me to any NHS or private appointments, very useful.
Hi people do go in and out of positive/negative, were other APS tests done also? Normally three different ones are done, I normally pass two out of three of them. MaryF
The secretary got it wrong I was positive after for beta-2 glycoprotein 1. The cardiolipin one was negative but I have had 3 beta-2 glycoprotein 1 test's now the last one being 12 weeks after and all coming back high. From what I have read you need to test positive twice 12 weeks apart for at least one of them in order to be diagnosed with aps....is that correct?
Yes they do like to do the test twice twelve weeks apart, I hope they can have a decent follow up chat with you. MaryF
Can anyone advise me how test results for Beta 2 Glycoprotein 1 Antibodies IgG (and IgM) are normally reported?
positive then negative now waiting for testing
2 positive 12 weeks apart and now now negative antibodies for APS?
What else should I ask to be tested for?
What INR self testing machine is recommended and where should I get it from..?!
