Help with my labs: Hi everyone, I've... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Help with my labs

Crogers profile image
4 Replies

Hi everyone, I've had 3 tests now come up positive for Anticardiolipin IGM and Phosphatidylserine AB IGM. I've had so many other tests looking for lupus and other Autoimmune Diseases but the only things coming back positive are these two plus a slight positive ANA (1:40). I've had no clotting incidence to date.

My doctor is only having me take baby asprin but I'm getting no relief with that. My current symptoms are severe brain fog and fatigue. It's like I'm in permanent slow mo. It's so hard to get through the day. I'm walking around like I don't know what I'm doing. It's so frustrating.

I also have Crohn's Disease :( If that wasn't enough, now I have this stuff going on.

Is there really no treatment for those with these antibodies with no history of clotting? I'm at my wits end because the drs aren't treating me and I go on with these awful symptoms and it's just not getting better.

One more question...are these two findings in my blood consistent with APS?

Thanks so much for any input!

Christina

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Crogers
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4 Replies
Manofmendip profile image
Manofmendip

Hi Christina

Thank you for updating us on how you are getting on.

We are not medical professionals on here so we cannot interpret your test results and you must discuss these with your medical team.

The severe brain fog an fatigue are common symptoms of APS and sometimes baby aspirin is enough but in other cases, where people have seen Prof Hughes, he sometimes puts them on a two to four week trial of Fragmin injections (low molecular weight heparin).

Please familiarize yourself with our charity's website:

hughes-syndrome.org

To to see a consultant who is experienced in APS/Hughes Syndrome.

Best wishes.

Dave

Crogers profile image
Crogers in reply to Manofmendip

Thank you Dave!

Lure2 profile image
Lure2

Hi,

Anticardiolipin IgM is related to this illness. I have those together with all the other antibodies there are for APS. The other I do not know. You have to ask. If you have got two positive IgM bloodtests I guess you should be diagnosed with APS. I think i read that you had not had any "events" but positive antibodies. Thus you know you have the diagnose of APS but no "event".?

This is a problem in your country I have learnt during the years I have been on this site. I am myself from Sweden. What is important I know, is that you get an APS-Specialist who is willing to try a Heparin-trial and see if it works with your dizziness and brain fog. Those things like brainfog and dizziness etc are symptoms of APS. I have had a lot of miniclots and Micro-embolies and they are not shown on an ordinary scan of today. That is why it is important to be anticoagulated because those tiny clots do harm to our systeme. We do not always "feel" them.

I understand how difficult it is for you to find a doctor who understands and will let you try more than Baby-Aspirin. I tried Baby-Aspirin at first and it helped for some years, but then it was not enough and I did what the doctors suggested; started anticoagulation with Warfarin. You could have other choises than Warfarin. Fragmin for ex.

Read also at hughes-syndrome.org/

Read also "Sticky Blood Explained" by Kay Thackray.

Best wishes from Kerstin in Stockholm

Crogers profile image
Crogers in reply to Lure2

Hi Kerstin, yes no events just the antibodies. The drs act like oh well the rest of your blood work is normal and all your scans are good so you should feel fine but it's the complete opposite.

I have read a portion of this book online already. I definitely want to buy it to read more.

Thanks for your support.

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