new here....

[ronnt]

Hello, I am 53 y/o male that has survived 3 pulmonary embolisms in the last 8 yrs. Dr's have no clue other than it seems to come from left leg. I have been checked for C protein factor or something negative. I ran across this earlier today and i am investigating. I am also a gulf war veteran that received many shots, in prep for desert but didn't have to deploy to desert just to asia,standby. I am thinking i maybe having some type of latent reactions as I age. I am on coumodin was on eliquis for a while not good many reactions, raised potassium, irregular heart beat, cramps etc. Just looking for answers theories ...something. Other than this no health issues what so ever...

[Wittycjt]

Have they checked you for APS/ Hughes. It is checked by labwork. This is a site for people with this disease. I can't remember what labs are checked at this time. You can probably go to the right of this page and click on "diagnosis" and it will tell you. Good luck, Cindy in NJ

[ronnt in reply to Wittycjt]

have not been checked first i heard of this was today i have an appt at end of month with specialist .....they can test then thanks

[Wittycjt in reply to ronnt]

Where are you located? You are lucky to already have a specialist as in the US they are rare!

[ronnt in reply to Wittycjt]

north carolina

[Wittycjt in reply to ronnt]

I am trying to keep track for us in the US , may I ask the name of the dr?

[Wittycjt in reply to ronnt]

The tests are for "lupus anticoagulant(LA), anti cardiolipin( ACL), beta2 glycoprotein-1 done twice twelve weeks apart. Best wishes to you, Cindy in NJ

[ronnt in reply to Wittycjt]

thanks

[HollyHeski Administrator]

Hi there and welcome, it is important that you do the three tests for Hughes Syndrome/APS They are easy and cheap for your main doctor to do. Two tests 12 weeks apart. It is also important to look at your Thyroid function plus your levels of B12, D and Iron.

The good thing is that you are on warfarin and have a specialist looking after you.

Let us know if you get diagnoses of APS/Hughes, as we can then share our knowledge and experiences with you.

[Lure2]

Hi and Welcome to our site for HS/APS!

As you are on Warfarin it is not possible to take one of the three bloodtests they take and that test is the "Lupus Anticoagulant" (LA). The other two are ok.

Remember we must never stop anticoagulation with this illness.

Best wishes from Kerstin in Stockholm

[Lure2 in reply to Lure2]

You should also know that there are people with this illness that are sero-negative from time to time even if they have HS/APS. We also need a high INR of Warfarin to keep symptoms-free. You can get a lot of info from this site.

Kerstin