sorry, another APS question

[charlieab]

Hi

I wondered if anyone could help me understand these test results.

I was told on the phone last week that my 3 APS antibody tests were negative. But I picked up a print-out of the results today, so that I can take them to the rheumatology appointment in a few weeks. And now Im confused.

The results are shown below. My questions are:

Do these mean that I test pooitive for the these APL anti-bodies but psoitive within the normal range?

Or does being within the normal range consititute being "negative"?

Does the prothrombin result maen that I have normal clotting time and so dont have a clotting problem?

Thanks for all your help.

Anti-B2-GP1 IgG ab lev 0.9 u/ml (0.0-5.0)

Anti-B2 GP1 IgM ab lev 0.6 u/ml (0.0-5.0)

Anti-cardiolipin IGg AB level 1.7 GPL U/ml (0.0-10)

anticardiolipin IgM AB level 1 MPL u/ml (0.0-7.0)

cant find the lupus anti-coag one

Also had thisresult clotting screen test

Prothrombin time 10.8 sec (9.00-12)

APTT 24.9 (24.7-31.7)

Fibrogen level 2.4 q/L (2.00-400)

[Debbweb01]

Did u ever test positive for the APS blood test! I know u must be tested twice! So sorry wish I cud help u more?

[charlieab in reply to Debbweb01]

Thanks Debbwebb

Ive only been tested once, with the results shown in my post above. Ive been diagnosed with two autoimmune conditions in last three months but am trying to pin down the unexplained symptoms, like livedo and swollen fingers. But Im starting to think that it is more likley to be vasculitis than APS. But tbh Ive no real idea! Just know that something is wrong.

hope you doing ok.

[Debbweb01 in reply to charlieab]

Yes I'm fine just a breathing problem past 2 weeks! On the mend now but need more prednisone to completely heal up!!! I know you'll get more responses from those more knowledgeable!!! GODSPEED

[charlieab]

Hi Debbs

Glad you are fine but sorry to hear about the breathing problems. Hope has healed up completely very soon.

best wishes

[charlieab]

Thanks. I did comletely take on board what you said previously about sero-negative aps and am going to ask the consultant about this in few weeks time.

But what I wondered was whether I could have APS despite the within normal range PTT, APTT, and fibrogen levls? Though I think the APTT is normal just by a whisker?

In otherwords, if I dont seem to be clotting abnormally fast, can I have a clotting disorder?

Thanks again for your time and all your help.

[Ray46 in reply to charlieab]

You need the LA result as well, and it is worth noting that if LA is +ve it means typically _slow_ clotting in-vitro (i.e. in lab tests) but high risk of clotting in-vivo (i.e. in your blood vessels). So, not clotting abnormally fast in the test tube doesn't necessarily mean you are clear of clotting disorders. APS is not always awfully intuitive....

[charlieab in reply to Ray46]

Thanks Ray. I think they did LA but they just couldnt find the result on their system at the GP's. But I think I might double check. Yes, I find the whole thing pretty confusing atm. Ive got to understad the two autoimmune disorders Ive been recently diagnosed with and try to get my head round the ones they are testing for. Its like I have a little bit of knowledge about 4 or 5 conditions. Not enough to understand them but just enough to scare the heck out of me. I wish I had never heard of autoimmune but I guess we all do.

Hope you doing OK atm and thanks again for info.

[jetjetjet]

Best of luck to you .

[charlieab in reply to jetjetjet]

Thanks Jet.

[charlieab]

Thanks apsnotfab.

[MaryF Administrator]

Agreed! I often use this example, plus I was seronegative for years! MaryF

[GinaD]

If you Google and then take a look at the clotting cascade you will see that there are many dominoes; and, given this, the logical conclusion is that people with APLS may have varying antibodies that can attack any step in that cascade. iMHO, ( I am not a health professional or a scientist! ) this explains why the bloodwork might be inconclusive.

[Wittycjt in reply to GinaD]

Gina, I always enjoy your replies. You state what I'm thinking

[charlieab in reply to GinaD]

Thanks Gina. Its all so confusing. And doctors Ive seen dont so far seem to know much more; though Im hoping vasculitis/ APS specialist in few weeks will reveal all.

I think that the only way to get sorted is to go off and do 8 years medical training, fours years rheuatology specialism, and then diagnose yourself! Though I dont think my brain fog would see me through a GCSE atm.

[Wittycjt in reply to charlieab]

Who are you going to see?

[charlieab in reply to Wittycjt]

Dr Nash. He was listed on the vasculitis UK site but I think he is meant to know about APS as well. Tbh Im think that vasculitis would explain more than APS symptom wise. but what the heck do i know.

[Wittycjt in reply to charlieab]

Good luck

[Puska]

Is there a reason why you are being considered for APS? Those test results look normal. Do you have other symptoms? I think everyone has a few of the antibodies so unless they are well over the range (in Aus it is over 40 even though it says 5 on the standards) then they arent used for diagnosis but symptoms might be

[charlieab in reply to Puska]

The consultant ordered APS blood tests because of symptoms, including levido reticularis on legs, arms and torso; blurred vision; hearing loss etc.

I think those blood results are normal and so vasculitis is being looked at. But, like a few have said above, there is seronegative APS. There seem to be the clinical symptoms of APS and some. So I dont really have a clue anymore!

[HollyHeski Administrator]

Many of us go round the circuit with doctors to get a diagnoses. Myself I went through over 20 years of health issues before I 'self diagnosed' and got to see the right one.

Dont give up trying, in the long run having a diagnoses helps but you still have symptoms that need treating now.

Let us know how you get on with your specialist.

[charlieab in reply to HollyHeski]

Hi Holly

Thanks for your reply. Sorry to hear it took you 20 years to geta diagnosis. Thats shocking but at the same not surprising. The system just is not well designed imo for quickly diagnosing rare complex multi-symptom illnesses like aps and sceloroderma.

I wont give up. I need to treat what is going on before it does much more damage. Thanks for your supporta dn I will let you know what happens at the next two appointments.

Take care