[wolfieUK]

My heamy has said that for PAPS to be diagnosed that I must have at least one of the following from both features.

1. Lab Features
a. Lupus Anticoagulant
b. Antiphospholipid Antibodies

2. Clinical Features
a. Venos Clots (egVT)
b. Arterial Clots (eg:Stroke)
c. Obstetric complications
i. Recurrent miscarriage
ii. Unexplained death of foetus beyond 10 weeks gestation
iii. Premature birth of otherwise normal baby before 34 weeks gestation due to pre-eclampsia or placental insufficiency

She can't give me the diagnosis as my son was born 35 weeks due to pre-eclampsia, & growth restricted, (even though its close to the definition , its not close enough!). That along with a positive Lupus Anticoagulant in my bloods, is basically not enough to diagnose me:
though I do suffer from Migraines, extreme fatigue, poor memory, stiffness (but no swelling) in hands, wrists, neck, & frequent pins & needles attacks. Sensitive to sunlight. Sister with MS.
It does appear that I obviously don't tick enough of the boxes!!:wacko:


So I was wondering "How we you diagnosed"
Thank you
Wolfie

 

[sam101360]

Hi:

Isn't it stupid that Dr's only "go by the book", I would consider a sceond opinion...mabe from a hemotologist if your insurance covers it.

I was DX as I had high anticardiolipins, 3 miscarriages one after 15 weeks. I only take baby asprin and that seems to keep things managable...I do still get bad headaches, but not that bad. The monitor things every 6 weeks to ensure that the numbers stay stable.

Stephanie

 

[cath]

Hi Wolfie,

Diagnosis is eventully down to a doctors decision and one doctor will diagnose differently to another.

The criteria you posted are indeed the official diagnosis criteria, so yes according to the criteria you don't qualify.....

However more important than criteria is what is in the patient's best interest. If there is any doubt, then decisions should be made that are in the patient's best interest. For example are you planning more babies? Are you going on a long haul flight or having major surgery. In those cases, a doctor might decide that given that there is a legitimate suspicion tha you have APS it is in your best interest to treat you. On the other hand since you've not had a life threateneing clotting event (stroke, heart attack, DVT), they may rationalise that actually you aren't at risk of that and that the risk of anticoagulation is is therefore greater than the risk of not anticoagulating. Does that make sense?

I'm sure if you develop a complication on the criteria list they'd diagnose and treat you promptly then, but in the mean time the dicision may be to watch closely and see what happens.

Personally my diagnosis is based on positive anticardiolipin antibodies tested twice (although the levels were low and some doctors may have disregarded them) and recurrent miscarriages (5 now, but 3 at the time of diagnosis, 2 after 10/40, 3 before that). Both my rheumy and obstetrician confirmed the diagnosis and agreed to treat me during pregnancy with heparin and asprin. When not pregnant though I'm not on any anticoagulation, as I've only had pregnancy morbidity. I also get migraines, livedo and have had thrombophlebitis 3 times. These symptoms (at least by my doctor) aren't 'serious'enough to justify long term anticoagulation.

Hope this helps,

X C X

 

[Raglet]

What does your rheumie say ?

Seems like your hematologist is being very nit picky. It's probably more important what your obstetrician says if you are planning on another pregnancy in the future (thinking clexane here).

Otherwise the treatment would likely only be low dose aspirin as you have not had a clotting event - of course you can buy at low dose aspirin the grocery store, but of course you should talk to your doctor first.

I think it probably is aps, I would talk to your rheumie. I try to minimise doctors, and my rheumie treats my APS very successfully. I have had multiple early miscarriages, but also arterial clots.

regards

raglet

 

[ALWIN]

I was diagnosed with APS following positive anticardiolipins tests - I don't know if they came back positive 2 or 3 times. But I do know they were not particularly high.

I only take aspirin for that. My migraines do not cease with aspirin. They are prevented by a small dose of betablocker.

I have never had a miscarriage, had 3 healthy, uncomplicated pregnancies and 1 hydatidiform mole that was mistaken for a pregnancy.

No lupus antibodies were found as far as I am aware. Diagnosis of 'mild SLE' was therefore made on symptoms alone. I take Plaquenil, but i think it is more to do with the collection of symptoms I seemed to be developing pointed to autoimmune stuff (Sjogrens also diagnosed) so they have decided to give me plaquenil to be on the safe side.

And it has made a difference.

As time goes on I do feel it very unlucky to have 3 separate conditions and suspect i may not have SLE, but I am comfortable with the other things.

Only really posted to demonstrate some doctors do diagnose on symptoms despite vague blood test results. I was seen by one of Prof. Hughes team at London Bridge.

Your final few sentences about symptoms just about sums me up too. Whilst there is no MS in my family, all my investigations did begin to rule out MS.

Good luck

 

[JoD]

Wow...I have everyone of the criteria...first time I ever wished to get all the answers wrong on a test

I have had 8 pregnancies. The first 5 were all complicated by pre-eclampsia with the second one being born at 32 weeks. # 6 was a stillbirth at 20 weeks. I developed DVT and pulmonary clots during recovery from the still birth. # 7 was an early miscarriage and the youngest was born at 26 weeks weighing 1# 14oz. I have also had juvenile arthritis growing up and began have migraines in collage. 2 years after the youngest was born I developed problems with understanding what people were saying at times. It sounded like they were speaking in tongues. ENT thought it could have been an acousta nueroma (sp?) and the MRI showed several "bright spots"...sent me to a nuerologist thinking it was MS. The doc did tests including for APS. It came back positive. The lupus dx came around 5 years later because doctors kept telling me my symptoms were depression because of the stillbirth and they youngest has multiple disabilities from his prematurity. The nuero on a long shot sent me to a rhuemy and the lupus dx took about another year to become offical.
Joanne

 

[tbunny1]

1. Vascular Thrombosis. One or more clinical episodes of arterial, venous or small vessel thrombosis occurring in any tissue or organ.
2. Complications of Pregnancy. One or more unexplained death of morphologically normal fetuses at or after the 10th week of gestation; or one or more premature births of morphologically normal neonates at or before the 34th week of gestation; or three or more unexplained consecutive spontaneous abortions before the 10th week of gestation.

Laboratory Criteria

1. Anticardiolipin antibodies. IgG or IgM antibodies present in moderate or high levels in the blood in two or more occasions at least 6 weeks apart.
2. Lupus anticoagulant antibodies. Lupus anticoagulant antibodies detected in the blood on two or more occasions at least 6 weeks apart, according to the guidelines of the International Society on Thrombosis and Hemostasis.

And the one these guys missed, Anti B2 Glycoprotien

I developed optic nueritis and lost sight in my eye, which lead to a MRI. MRI showed I had recently had a stroke! Rechecked a month later, and MRI shows another stroke!

All this sent my nuero scrambling to try and guess what was causing it. Upon reviewing my lab results with him (I ask all my doctors for my own copy of labs so we can go over them together) I pointed out that my IgM was quite elevated, and asked if he was testing for APS. Got a big, dumb, blank look.

Eventually, it was my rheumy who made the diagnosis when I tested stongly positive for anti -b2 glyco.

Keep at it, and trust your instincts - they are often quite right! Be Well, Tracy

 

[greenhaggis]

Wolfie,

I would like to add to this thread although I do not have bloods that indicate APS.

I had 5 pregnancies - that all had complications that may well have been caused by APS, my bloods were never tested at the time.

Even though I did not fall into the timeline of what should happen before or after a certain week my Immunologist is quite certain that its was all too suspicious and in his opinion I do have it!

I cant take asprin and am not going to have any more children so he just monitors my bloods still for APS and has informed me to be more concious of clotting problems!

I would certainly push for a secong opinion just in case, especially if your are contemplating getting pregnant again! It is of course possible for others to get pre-eclampsia and restricted growth but knowing what I did with all my pregnancies I would err on the side of caution if I was going to get pregnant again.

Do you have Lupus Wolfie, you dont mention in this post and I cant remember!

Take care anyway!

Love Lesley