just had my 4th positive beta 2 glycoprotein test. Went in to see the rheumatologist and he said well thats good its dropped from the last test (but its still not in normal range) so no action required because I've never had a blood clot. He has never once asked me what are my symptoms and surely he's needs to go off them?
Is this normal for your numbers to fluctuate?
also took my aptt which was low, it was under the normal range. I think this was taken part of the lupus anticoagulant test because I asked about the lupus one and he said this was the only thing that showed up with that one. But if I hadn't asked he wouldn't have said anything about the aptt being low.
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Hi, it is not unusual for results to come and go in terms of high or low, sometimes they can even disappear only to return. If you have another appointment, try and write down your medical history in bullet points, also symptoms and medication and any other relatives past or present with autoimmune disease including Thyroid, so it helps you are your next meeting/medical appointment with them. MaryF
Thanks for reply. I will write it down, I don't think he's interested in what symptoms I got. Problem is most of these professor's only know the thrombosis side of aps and don't recognise a lot of the symptoms
I don't even know what questions to ask when I finally get my Rheumatology appointment next February! Sorry I can't answer your questions but I hope you get improvement.
Next February is a long wait! I write things down but never end up reading them out. Probably because most of the time they don't want to listen to what I got to say anyway
The levels of our test results go up and down all the time, it’s quite normal. Also a higher number of antibodies does not necessarily mean worse symptoms.The criteria for an APS diagnosis includes clinical evidence, ie some form of clotting or pregnancy problems. If you have very bad lesser symptoms you might find a consultant who will diagnose and treat you because of them but it’s rare, especially these days.
At the moment you don’t have the full syndrome because of a lack of clinical evidence, you are antiphospholipid antibody positive. Unless you become triple positive you will not get anticoagulation normally.
Scary to think I got to wait for something to happen 😕 going back 10 yrs ago I had a miscarriage at 7 weeks, then another at 8 weeks and then an ectopic but they probably wouldn't count that as one of the criteria as they were very early on not late miscarriages. I did go on to have two children after that
Early miscarriage in the first 13 weeks is the most common time according to APS support. But you generally need 3 consecutive miscarriages , but the ectopic might also count, I don’t know. I’m glad you had your children in the end.
I wonder after your TIA (might been a microembolie or TIA or microclot), are you on any anticoagulation drug? Those small ones do not often show up so the doctors do not know that they excist. They do and do harm to our body.
So you are only positive 4 times to the beta-2-Glycoprotein1 and not Lupus Anticoagulant and Kardiolipinantibodies?
Hope you have got a Specialist to talk to who understands this illness and that we need to thin our blood to get rid of the different neurological symptoms.
Yes I'm only positive for beta-2 glycoprotein. Im not on anticoagulant tablets. Im seeing a professor from rheumatology so I assumed he knows his stuff, but when I asked if he knew aps can cause seizures he said no. I really don't think he knows aps can cause a lot of neurological symptoms and giving anticoagulant tablets can help this. Unless I have a clot or my mri shows up with something he won't act. So waiting for mri results and I will test again for beta 2 glycoprotein in November. I've requested I see my mri results and I don't think he's going to be happy when he receives the request.
Don’t know where you are based or which hospital you are attending, but I’ve had very good linked up treatment between the heme department at UCLH and the National Hospital for Neurology at Queen Square (which is a specialist element of UCLH). They now say my long term epilepsy and other more recent neurological problems are very likely rooted in APS, which was only diagnosed in 2020.
I know neurologists often don’t have a very good rep in the APS world, but there are certainly some who will see and work on a link.
I've been having seizures for 3 yrs but when I had an eeg it was negative (I wasn't having a seizure during test) so they said not epilepsy and diagnosed me with function neurological disorder. I've never been seen by anyone for fnd just been left. As well as seizure I have what looks like a movement disorder but no one has seen my videos to see what it looks like. Its only I got tested for lupus that the test beta 2 glycoprotein came back positive and I thought the neurological symptoms for aps fits me.
I'm in Wales so to travel to London wouldn't be a problem. How much do they know about the neurological aspects of aps?
In my case the treatment for the two is what it would be anyway, anti seizure meds for epilepsy and warfarin for APS.
It’s more a case of the two sets of specialists acknowledging the link and the complexity - and working closely together when there was a crisis (in my case a CVST).
I don’t know if living in Wales causes any issues with referral, but maybe worth discussing with your GP. Worth saying it’s quite a time and travel commitment to have two sets of specialists and all the relevant tests in London, although it does ease down once you move into longer term management.
The advantage of course is that you get deep specialisation, so rather than a general neurologist who covers stroke, Parkinson’s, MS, etc there is a whole department who do only epilepsy, similarly a department of heme who only do clotting disorders.
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Possible SLE now but confused
My appointment at St Thomas'
pregnant and just diagnosed with aps
CIRCLES :(
