Still no dx

[mariannagowens]

I've been seeing a rheumatologist for about 4 months, after my General Dr. Referred me. She did bloodwork that revealed positive ANA of 1:320, among other tests since I was having so much joint pain and a slight chest and upper back rash. I've tested positive for Lupus Anticoagulant, beta 2 glycoprotein, and anticardiolipin. My rheum didn't repeat those tests and I'm a little concerned. Heart problems run in my dads family, 4 brothers with heart attacks and my grandfather died at 55 from heart disease. I'm scared that there aren't any doctors near me (Atlanta, GA) that know enough about APS. Any recommendations?

[Lure2]

Hi and welcome to this site!

I live in Sweden so I know the US-Specialist not more than when I hear our American members talking. I guess you will have more answers from them but you may find some of them on this link: apsaction.org

I want to tell you that I have also all three antibodies positive also in high titres.

If you have high bloodpressure get it down. I started with Baby-Aspirin but later I had to take Warfarin.

Stay on here because you may have good answers from all our kind and knowledgable members.

Best wishes from Kerstin in Stockholm

[windless22]

Hi the anti coagulant and anti cardiolipin are for a condition called hughes syndrome they require a 2nd set tests 12 weeks after first positive ones .then history of clot miscarriage for some rheumatologist to diagnose then refer to heamatologist for treatment of blood thinners.

Sorry hear heart issue my dad had that maybe 2nd opnion.

Cause those need following up i had same problem.

Do keep posting seek input gp..

[Holley]

Marianna,

I'm in Washington DC and was diagnosed with APS in early 2006. I was seen by the heads of hematology of Washington Hospital Center and Georgetown University Hospital following a complication that occurred during my first attempt at open heart surgery. I got nicked in the carotid artery, had "strange" bleeding and developed a large hematoma that had to be evacuated by a vascular team. I tested positive for Lupus Anticoagulant and anticardiolipin antibodies. One hematologist was reticent to diagnose me since I didn't meet all of the criteria. She claimed the hematoma did not count as a clotting event. The other doc diagnosed me and has been treating me since. Many patients with APS have heart ailments as well. I had to have my mitral valve replaced with a mechanical one. I also take medications for high blood pressure and high cholesterol.

Has the rheumy discussed anticoagulation with you? I take Coumadin for example. There are any different drugs on the market. Have you had a clot or TIA? Your relatives with heart problems, have they been tested for any blood disorders?

Often people with APS have family members with other autoimmune diseases. For example some of my family have Multiple Sclerosis, Crohn's, Lupus, and Meniere's Disease.

I won't be seeing my doc until the summer but I'll try to remember to ask about specialists near Atlanta.

Lisa

[mariannagowens]

Thank you, Lisa! My dad and brothers have not had special blood tests, to my knowledge, though I've learned of two aunts, my dads sisters, who had lupus. My dad is in denial about his own health though, so he doesn't deal well with my issues at all. I may try a new rheum since mine didn't retest. I just want to be sure I'm doing what's best for me, especially if I need to be preventing further issues. I haven't had any TIA's or clots that I'm aware of, thankfully. I asked him about taking aspirin and he said yes, that's a good idea. I don't think he would've suggested if I hadn't asked. I'd love to feel like I could get some real answers.