Confused Newbie

[3Snyders]

Hello All - I am from the USA and just came upon this forum and am looking for some answers/information.

I am 38 yrs old and had a blood clot in my abdomen (superior mesenteric vein) in October. I have been on Coumadin since then. I have had 2 out of 3 positive blood tests for lupus anticoagulant over the course of the last 7 months. My dr has told me I will need to be on Coumadin for the rest of my life due to that result and the serious of where my clot was.

Is Hughes Syndrome the same thing as Lupus anticoagulant? Has anyone on this site also had a clot in the superior mesenteric vein? There seems to be limited info/forums on either.

[MaryF Administrator]

Hi there and welcome, yes you have passed a test for Hughes Syndrome/APS, and I am very please to hear you have had such direct treatment. There are lots of friendly members on here and information sharing is good, do please familiarize yourself with our charity website, the information contained is great, also plenty of recommended books to read: hughes-syndrome.org/

There are lots of people from the USA on here, do feel free to ask questions and get to know us all.

MaryF

[Lure2]

Hi and welcome to this friendly site where we try to help eachother as we all have the same illness.

APS is not very common and very few doctors know about it as a matter of fact. That is why it is important to have a Specialist who understands what we are talking of.

I have Lupus Anticoagulant like you, which is one of 3 or 4 antibodies to diagnose APS. I am on warfarin for life and I live in Sweden. We have too thick blood when we have APS and when the blood is thinned we feel much better and can live a normal and much safer life.

I prefer "Sticky Blood Explained" by Kay Thackray among the books Mary recommends.

Kay has APS herself and writes of the different symptoms and how it is to live with this illness.

Best wishes from Kerstin in Stockholm

[3Snyders]

Thanks ladies for the response. I will look into the books.

[Manofmendip in reply to 3Snyders]

Hello and welcome.

I fully agree with what my colleague, Mary, & Kerstin have already said.

It is good that you have had such a swift diagnosis.

Best wishes.

Dave

[Lure2 in reply to 3Snyders]

I want to add that Sticky Blood Explained is written in 2002 so it is not quite new with the latest drugs etc, but it tells about the different symptoms we share and how to learn to live with APS. It is good also for relatives to understand.

It meant a lot to me reading it.

[Hidden]

where are you located?

[GinaD]

Hi, and welcome! I'm from West Virginia. I had to travel to Cinnamon OH for my diagnosis after a series of terrifying mini strokes. I still hike. I still bike. I lead a fairly normal life. The American APS site has useful information but I must warn you that the site is full of trolls who will get your email and then begin to spam you. That doesn't seem to happen on this site.

[mylafont]

Where in the US are you? I'm in Louisiana.

I'm positive for lupus anticoagulant, the cardiopolin and the beta2 antibodies. I think that's the names. Without signing on to my records I have to guess.

I also test positive other autoimmune diseases, but don't have symptoms. I'm told it's not unusual to be positive and not have the disease.

[Lure2 in reply to mylafont]

I have not heard anyone say that they test positive for an autoimmune disease and not have any symptoms of the disease. I know it it difficult to separate Lupus and APS.

You are trippelpositive like me. It is not very common.

Kerstin

[mylafont in reply to Lure2]

What are you triple positive for?

I test positive for sjhogrens and one other antibody. I'd have to go check my records. Heading out of town for the weekend. I'll check my numbers later this morning if I can.

[Lure2 in reply to mylafont]

To have a diagnose of APS we usually (if we are not seronegative) test positive for one of 3 - 4 antibodies.

You have told me that you had positive antibodies for Beta2Glycoprotein1, Lupus Anticoagulant and also Kardiolipin.

I am also positive for Kardiolipin IgG and IgM.

It is not so common to test positive to all three. We call it trippelpositive here in Sweden.

Sjögrens syndrome is another illness (also autoimmune and usual together with Lupus, APS or even sometimes Thyroidosis.

Hope I have understood you right.

[mylafont in reply to Lure2]

I test positive for

ANA

SSA

Sed rate

Cardiolpin

LA

High CRP sensitivity

Beta 2

And I think I remember IgG and IgM being positive.

I'm have so many test results in my online records it's hard to keep track

[mylafont in reply to Lure2]

I only have symptoms of APS and some arthritis.