I was diagnosed 30 years ago with APS (repeated miscarriages). At the time, I was told it would only be an issue while pregnant. Never really any issues throughout the years. I have had bloodwork done several times showing I was triple positive, but no one seemed that concerned. I went to a hematologist about 6 years ago. He told me to take a baby aspirin every night and I did not need to see him again unless I had a clot. I started having migraines w/aura -only the weird visual disturbances, no pain, several years ago. Over the past several months, they have been coming on with much more frequency. The neurologist does not seem concerned and told me to take a Nurtec. Recently had bloodwork done, and the Antiphospholipid markers are much higher than they have been. Yesterday, I took a train to a city to meet with an APS Specialist. The office told me a consultation would cost $1000 (no ins) and it would be about an hr. It was 28 minutes. He said he wanted to make sure the migraines are just migraines and not silent clots. He wants me to find another neurologist and have a brain mri, and go to the cardiogist for a TEE test. He said he never recommends baby aspirin for APS. He said if either of those tests show anything he will want to put me on Warfarin. This terrifies me. Plus I have osteopenia, and high risk for AMD and retinal detachment. I have also noticed my memory doesn't seem as sharp, don't know if this is just stress! Does anyone have any advice?
Long time with APS. Getting worse?? - Hughes Syndrome A...
Long time with APS. Getting worse??
Sounds to me as if this doctor knows what he’s talking about. Triple positive APS is always the most difficult and unfortunately having so called obstetric APS is something that is only true until a person suddenly has a clot years down the line.
APS is a very new condition and it has not been around long enough for them to know that those that have it when they have babies don’t suddenly have issues when they have been ignored 20 or 30 years later! Funny how many of the women who turn up with unprovoked strokes in their late 50’s tell stories of miscarriages etc. So the so called obstretric APS is something I take with a pinch of salt if I had positive high antibodies and symptoms. Taking warfarin is the ONLY life saving method to stop clots so if you are having the warning signs I would think seriously about the advice you have been given.
first of all – don't be afraid of warfarin. I have been on warfain for 24 years now, and have never had a serious after-effects. I once was triple positive over several years. Arriving at my diagnosis, came only after several migraines that were later described as many strokes, and one obvious stroke which involved left side paralysis. I will never forget, lying in hospital bed, and hearing the emergency room physician outside of my room, say to a nurse, "her cholesterol is low and her blood pressure is low so she's just making this up for attention." I should've asked him right there and then how I was making up left side facial paralysis. I could've pattoned the procedure and become a millionaire within a week. ( IF he was right! -though, of course, he wasn't.) However in 2004, I went gluten-free and since then all of my APS blood tests have been triple negative. My wonderful internist wants me to stay on warfarin, but to keep the lowest INR possible without any symptoms. Second: My advice to you would be to explore a Restrictive diet with the help of a dietitian to see if there are any allergens, you are consuming. Dr. Hughes himself found a great correlation between gluten sensitivity and APS. I would try first of all to eliminate , all gluten and see if that helps.
Hi Gina,
Thank you so much for your reply. I am sorry about your experience with that dr in the hospital! So Wonderful to hear how well you are doing! I am seeing a functional dr, and am free from gluten, sugar, soy, dairy, rice, processed foods. I try to keep my glucose between 85-115. My labs were last done the end of March -Anticardiolipin Antibodies IgG ->150, IgM -37, IgA 41, Beta 2 Glycoprotein I Ab IgG -135, Beta 2 IgA -27, Beta 2 IgM -31. I had 30 migraines w/aura 2024, and 10 so far this year. I am so scared.
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