Hello everyone. After scouring the internet for far too long I've come across this site which seems like a great resource. Here is what is going on..
I have many signs of Lupus. So many that my Naturopath md ordered a ton of lupus tests. I had to wait almost 2 weeks to get them back.
The results were negative for all the "lupus" tests but my lupus anticoagulants came back positive.
So now we are like deer in headlights. I'll be seeing a rheumy but it'll take a bit to get in and I would love some information.
Can having positive lupus anticoag affect how I feel? Fatigue, back and neck pain, butterfly-flushed cheeks, swollen painless lymph nodes? Or is it JUST something than can give you clots and that's it?
Does having positive lupus anticoag test with the above symptoms mean I have hughes? Or would I need to have a blood clot and not systemic symptoms? I know another way to diagnose is to take another test in a few weeks.
I was actually hoping a lupus diagnosis would justify how I feel and all of my systemic symptoms but alas here I am still trying to figure out what's going on- and now on top of it I've had these positive tests.
Any help or info is so appreciated! I am in the US
Court
Hi Court,
Welcome to the APS-site!
I am in Stockholm and I have APS and I am Lupus Anticoagulant positive since 13 years and have the other two antibodies also positive.
Good that you are seeing a Rheumatologist but he or she must also KNOW this illness which is very important otherwise you will not get the right treatment which is also utmost important to feel ok again.
A Specialist and the right anticoagulation will be the two main things to fulfill.
Try to learn (after you have seen the Specialist perhaps) as much as possible about APS and read also from this charity website. A lot of info.
Read also "Sticky Blood Explained" by Kay Thackray. This book is not the newest and she does not speak of the latest oral anticoagulation drugs but she has APS herself and she writes about the different symptoms of APS and how it is to live with it. After i had read that book I understood that I had to do as the doctors suggested and that was to start Warfarin which I did not like at first but now I know its was my life saver. Stay on this site if you have APS as you will learn a lot from all our wonderful members.
Best wishes from Kerstin in Stockholm