New APS Diagnosis

[leamercedes22]

I am from United States and I was just diagnosed with APS after having abnormal PTT tests. I have never had symptoms that I know of, have had surgeries before with no issues. After 6 months of Testing my Hematologist finally tells me "Yes you have it" there's nothing to do unless you plan on getting pregnant or have surgery. I am very confused because I read on here how horrible this disease is and it scares me yet I have no symptoms and not sure what I should be doing .I am going to see a Rheumatologist that apparently knows about APS to get a second opinion and I take a baby aspirin a day and some natural supplements such as Nattokinase, aged garlic for cholesterol. What do I need to look out for, for any of you that have had a stroke what were your symptoms. Has anyone been diagnosed with this and been fine?

[Wittycjt]

I see you posted a couple of months ago has something changed?

[leamercedes22 in reply to Wittycjt]

I did post a few months ago, this was when I had not yet been diagnosed. I went back for the 12 week blood work and was just diagnosed.

[Wittycjt in reply to leamercedes22]

Are you still asymptomatic ( without symptoms)? Any new treatments now? Remind me, what state in the US are you in? Did you ever have your surgery?

[leamercedes22 in reply to Wittycjt]

I am in CT and no I never had the sinus surgery. My doctor did not put me on anything and I have no symptoms. To be honest was a little surprised that my hematologist just sent me on my way. This is why I am going to see a rheumatologist tomorrow that apparently is more versed in APS. I don't know much about APS as most of what I read people have symptoms

[Wittycjt]

Have no symptoms either. Yes, I know this can be very confusing as others have horrible battles they are fighting. I say... don’t look a gift at the presenter. High hopes for you. You may just be able to be managed by abs by aspirin a day but make sure you take it as prescribed

[Wittycjt]

Meant to say I have no symptoms either

[designer16]

Hi & Welcome,

I also live in the US. I can tell you your dr is wrong. Many of the US drs. do not believe in the APS/Hughes Syndrome. I have found that I have to educate my drs. In my case I wasn’t diagnosed until I had multiple miscarriages. I was treated with heparin while pregnant & then when my daughter was born I was taken off the meds. I saw a neurologist because I was having back pain. She told me the APS put me at high risk for a stroke or problems as I got older. At that time I had no symptoms. I moved to a new city & told my new dr I had APS. He repeated the test & I tested negative. He told me it went away. Soon after the nightmare started. I was having back pain & problems walking. Then even though all the test were negative I was told I had MS. Non of my symptoms supported that diagnosis. I spent the next 3 years hearing I wish I new what you have so I could help you or you have MS. Then finally I had it, I went to London to see Prof Khasmasta & Professor Hughes. They told me that I definitely had APS, that my medical history supported it. I was given Clexane & most of my symptoms went away. I have been going to London Lupus center for 5 years & finally after another hematologist told my hematologist that I definitely had APS Syndrome he finally believes I have it. The hematologist is not as educated as the Prof. Hughes. They have been wrong so many times. There are so few drs in the US who know about this disease. I recently saw Jill Schofield in CO she studied with Professor Hughes. She was extremely knowledgeable. She changed my heart meds because the drs had me on the wrong one, made a giant difference. I had so many allergies to meds & she taught me how to use a website to check the ingredients & figure out what I could take. My advice is to find a dr. That does know about APS Syndrome. Learn your body & pay attention to it. This is a small vessel disease so there is no test that you can really visualize the vessels. A baby aspirin everyday couldn’t hurt. This disease snuck up on me & hit hard.

Designer16

[leamercedes22]

OMG That is so scary. I take a baby aspirin every day and Nattokinase. I am going to see a specialist tomorrow and def can not afford to fly to London so lets see how this guy is. What about diet and exercise what did you change/not change.

[GinaD]

Of course, this is just my unsubstantiated theory, but due to my consistently positive ANA, and my Father’s recurring DVTs, I suspect I had positive blood work for APS for decades before my first symptom. And I believe Father’s “ quasi lupus” ( which is how he described it) was actually APS. Med science is still evolving. Given the relationship between the body’s reaction to gluten, an imbalance in the gut biome and autoimmune flairs I would suggest sticking to your asperin, and trying a gluten free, extra raw veggie diet. When driving long distances, make it a discipline to step every 50-90 minutes and. walk around. Drink water to stay hydrated. If you’re fine now, that may persist for quite a while -or for life,

[Tucson]

I had no symptoms at all and then I had a stroke, it affected me until I recovered from the stroke, I've had 3 strokes that I'm aware of and around 30 that show on Mri that I was blissfully ignorant of. I take 3 mg of Warfarin for my Aps but no other drugs. Of course after my strokes I'd still be on Warfarin and I'm still symptom free. This condition has no Norm it affects us all differently.