I would also have a new dr test for lupus as lupus can make carrying a baby to full term. I know you said you have been tested for it in the past but I'd have it checked again. Sometimes you can be symptomatic and still test negative. I had Ankylosing Spondylitis for approx 20yrs before being diagnosed and saw so many specialist!
Good luck!!
Hi.
I have been told that you can test positive, and then negative for the APS, I do believe the antibodies can fluctuate. So i would look into having another test for APS, It is a possibility that you test positive when you are pregnant.
Have you been tested for the Lupus Anticoagulant also?
Why didnt the rheumy offer you the needle test if he thought you had Bechets?I do know there is no persific test for Bechets, as in a blood test, but if your rheumy suspected it, like i did, he could have done the needle test, and that way he perhaps would have got a good idea, Its a simple test, but it doesnt work for everyone with Bechets. But it would be worth a try in your case.
If it is Sjorgens, the best way to tell is with a lip biopsy, this is usually he way they test in the UK. Along with having a Positive ANA and SSB.
They can also do the schirmer test, with the blotting paper under the lower eyelids.
I would definately bring up all three illnesses, which i have mentioned to you, and ask for testing, you need to find which illness it is, so you can have the correct treatment to try to manage the symptoms.
With all auto-immune diseases, the antibodies can wax and wane, so that means you may have the antibodies really, but they are not active at the time of blood draw, which give a false negative reading.
I hope i have helped you, and i would definately be mentioning all three things i have said.
A lot of auto-immune diseases, there symptoms can overlap one another, which can make it hard to just pinpoint.
But with your past and now medical history, all the three illnesses i have mentioned sprung to mind.
Please keep intouch, as i am interested in this post, and would like to know the outcome, as to what this is.
Im wishing you well, if you need anymore info, just give us a shout.
Look after yourself
Nicola
thank you so much for your reply! i have been tested for the aps and it was negative. i was tested after i had my 3rd baby. is it possible to be positive when i am pregnant and negative when i am not?
i have seen one rheumotologist so far and he told me he thought i had bechets disease because of the sores and because i have hard red little bumps on the backs on my arms. they kind of look like pimples and some times they itch. he told me there was no blood test for it and did not offer to do any other test, but i will definitely bring that up to the new rhemotologist i am going to see this month.
since i had the positive ana and ssb does that mean i automatically have sjorgens? or can the ssb be something else?
Firstly i would like to say, im so sorry to hear of your loses. It must have been really hard for you, and you have definately not had a good time.
Right firstly a few things ive picked up on, youve had two premature deliveries, and 1 miscarriage. Have you been tested for the anti-phospholipid syndrome, known as APS. Usually women who miscarry or have premature deliveries can have this syndrome, known as sticky blood.
This is an auto-immune blood disorder, and i think if you havent been tested for this , then you should before trying to conceive again, as pregnancy can be successful with the right treatment, which is usually a simple aspirin, but you need to be checked for this first.
Secondly you say you are having dry mouth problems, which is a good indicator for Sjorgens syndrome, and then you say you have a positive ANA, maybe a lip biopsy could confirm Sjorgens if that is the problem, and they also do the schirmer test on the blotting paper for the eyes. as Sjorgens affects the eyes too, as well as other body systems.
Then you go on to say about vaginal sores, this automatically shouted out to me Bechets disease. Which is an auto-immune disease which can usually cause vaginal , or mouth ulcers. which is an inflammatory illness.
Now Bechets can be hard to diagnose, but having an positive ANA, followed by symptoms could be a good indicator, they can also do the needle test, to check for Bechets, where by they jab you with a needle and then check it 24hours later to see if the skin has reacted.
With the symptoms you have described,in your post, i would definately want to be checked for all three things ive suggested to you.
I am not a doctor though, but would suggest, all three illnesses, to a doctor for testing, and maybe the correct treatment, just so you dont have to suffer unduly.
Im sending you best wishes,
I hope i have helped you
Nicola