Lupus anticoagulant no longer positive.

[Newcastlelad]

Hi everyone a little background. I have been suffering with symptoms of auto immune disease and after pushing my GP to run the APS blood tests I had a positive Lupus anticoagulant 3 months apart from each other which led finally!!!! to a rheumatologist appointment. I told the rheumatologist about my symptoms and about being checked for Sjogrens syndrome and being extremely worried about my knees and hips having Avascular necrosis he looked at my knees and asked had I had an X ray taken. I told him yes but it was 8 months ago. He looked at the X ray and declared there was no sign of necrosis and told me to see a physio for exercise to get fitter.

Anyway this morning a letter arrived from him 4 months after the appointment. It says they took the APS bloods again and now it's negative for Lupus anticoagulant and he can see of no reason there is an on going auto immune condition and he will not see me again. I'm quite angry as the symptoms I have are in my opinion definitely auto immune. My family has a history of auto immune disease as well. After the initial results of the positive LA I was so happy finally I had something they can not deny and they will start to take me more serious but now even this has gone and it feels I'm back to the start.

I was given the name of a specialist in APS to be referred too on this forum but the referral never happened and after the GP realised the mistake they quickly sent me for a urgent referral which turned out to not be the specialist I asked for.

So could anyone give me some advice about the antibodies now being negative.

I have not had a Diagnosed DVT but I suffer from what I think are superficial clots which seem to go through phases of lulls and flare ups. I also have flare ups of migraines and vision problems.

Thanks for any help sorry to rant on.

[MaryF Administrator]

Hi, it is a real shame your GP referred you to the wrong doctor, unfortunately this is what can happen with the wrong referral, can you go back to the GP practice taking your most trusted friend, colleague, relative, or neighbour etc as your patient advocate? Can ask for another referral. If not perhaps saving up for a one of private appointment? This is not easy and a lot of us have been in this position before, I know I have been. Blood tests are only part of the picture, you can go in and out of negative/positive testing. In view of your symptoms you do need more help, and do keep your original blood tests to hand, as they are revealing having been done 3 months apart, did they do the other two blood tests? MaryF

[Fra22-57]

I find some specialists so rude.I wonder how they get in their position.Do as MaryF advices and return to GP with a colleague and ask to be referred again.The first choice would be good.I have been discharged before from people.I just think they have such a long list of people to see they dont want to take time on people.If diagnosed positive you have APS and should be treated as such.Dont give up

[Wittycjt]

I believe weve been told- once positive, always positive- no matter what later blood results deny

[WendyWoo50]

I tested positive for the lupus anticoagulant antibody. I was already seeing prof D’Cruz for Lupus and Sjogrens at the time. He diagnosed me with APS there and then.

However the following year the APS tests were repeated locally and came back negative. The specialist I saw locally (Haematologist) did not believe in Sero negative and wasn’t helpful.

A year later I saw a different consultant in the same department, who does believe in zero. Negative. She said I have enough symptoms not to worry about the blood tests. She sees me now and is understanding, compassionate and as helpful as possible.

It really is all about finding the right specialist to support you. Good luck.

I’m sure the admin can direct you to the report where Prof Hughes discusses the twins with the same symptoms of APS. One tested positive and one negative. He treated both the same and both responded. Maybe send that to the dr you saw (with a view to helping them understand the condition more - not to stick two fingers up at him, so to speak).

Good luck x