Living with Antiphospholipid Syndrome

So,

After months of bouncing between specialists and endless lab tests, I finally got a diagnosis at an immunology clinic at Mayo Clinic today: Antiphospholipid Syndrome.

I don't (technically) have Lupus, so my prescribed treatment is just 100mg of Aspirin daily for the next three months before my follow-up...

The muscle pain in my legs is intense, and standing up has become a real struggle.

It all started when I had circulation issues in my right eye. 😢 😢

If anyone here deals with this same syndrome, I would truly appreciate some advice...

My doctor insists everything should stabilize with medication and regular check-ups, but knowing there are clots forming throughout my body is terrifying.

I know there are much worse things out there and I need to stay positive, but at 25, I guess I haven't lived through enough to feel prepared... 🙂

I assume some people here might be managing both APS and Lupus simultaneously.

Any guidance or support would mean the world to me.

Mainly, I'm wondering about diet—is there anything specific I should avoid?

And pregnancy? My doctor mentioned it's possible while on anticoagulants.

Thanks in advance for any insight. 😍

I don't know much about your diet or whatever else is going on, and you probably already know this, but if you're smoking, you really ought to quit. Also, I'm pretty sure you shouldn't be on oral contraceptives either. Best of luck.

Thank God, I don't smoke—well, I haven't for quite some time now—and I am not on oral contraceptives. I appreciate the response. 😁

Just checking in. I’ve been dealing with Antiphospholipid Syndrome for seven years now... managed a successful pregnancy along the way... so if anyone has questions, I'm happy to help... cheers...

Hey everyone.
It’s frustratingly hard to find real-world experiences regarding Antiphospholipid Syndrome. After undergoing a carotid and vertebral artery dissection, my doctors ordered blood work, which led to diagnoses of Antiphospholipid Syndrome, Vasculitis, and Hyperhomocysteinemia. I’ve been on Warfarin for a year and a half now. My doctor says it’s a genetic mutation. Here’s the kicker: I’ve had four perfectly healthy pregnancies and births before all this. Why now? And when did this even start? I have no clue! When I look online, everything is focused on people discovering this during pregnancy.
Does anyone have any advice? Is anticoagulant therapy really a lifelong sentence? Is there actually any hope that my blood chemistry can return to normal?
Thanks for any insight you can offer.

Antiphospholipid syndrome is an autoimmune condition where, basically, your body creates antibodies against certain molecules, which triggers blood clotting. Depending on which clinical criteria you meet, treatment usually means either lifelong Aspirin or a lifetime of Warfarin (or some other vitamin K antagonist). Since this syndrome causes clotting, the most common issue is deep vein thrombosis leading to a pulmonary embolism, though you could also deal with heart attacks, strokes, or clots in the GI tract and renal veins. Because of all that, staying on top of your meds is pretty much non-negotiable.

Donna Lopez79 said:Hello everyone.
There just isn't enough information out there regarding Antiphospholipid Syndrome. After undergoing a carotid and vertebral artery dissection, I was sent for bloodwork and ended up being diagnosed with Antiphospholipid Syndrome, Vasculitis, and Hyperhomocysteinemia. I've been on Warfarin for a year and a half now. My doctor says it's a genetic mutation. I had four perfectly healthy pregnancies before this happened. Why did this even occur? And when did it happen? I have no clue! When I look online, all I find is info about this diagnosis being discovered during pregnancy.
Does anyone have any advice? Is anticoagulant therapy really a lifelong sentence? Is there any hope that my blood chemistry might actually normalize?
Thanks to everyone for responding.

Why did this genetic mutation manifest in you? Nobody knows that (yet). But if APS—that's Antiphospholipid Syndrome, for those wondering—is genetically proven, then logically you were born with it. It can't just "spontaneously fix itself." That would be like expecting someone with Trisomy 21 to just have one of those extra chromosomes vanish into thin air on its own.

The fact that your four pregnancies went smoothly is great news—be grateful for that, because some women aren't even diagnosed with APS until they deal with constant miscarriages.

My advice? Listen to your specialist. That person has actually seen you in person and understands your medical history far better than every single one of us on these forums combined. So, if they tell you to take antiplatelet drugs (like Aspirin or a thienopyridine) for life, then take them for life. If they say you need anticoagulants (Warfarin or an NOAC) for life, then you take those for life. Period.

Donna Lopez79 said:Hello, everyone.
It’s hard to find much useful experience regarding Antiphospholipid Syndrome online. Following a dissection of my carotid and vertebral arteries, I was sent for bloodwork and ended up with a diagnosis of Antiphospholipid Syndrome, Vasculitis, and Hyperhomocysteinemia. I’ve been on Warfarin for about a year and a half now. My doctor mentioned a genetic mutation. I’ve had four successful pregnancies before this. Why did this happen? And when exactly did it start? I just don't know. Searching the internet only turns up info on this being discovered during pregnancy.
Does anyone have advice? Is anticoagulant therapy really a lifelong commitment? Is there any hope that my blood chemistry might actually normalize?
Thanks for the help.

Ma'am,

Based on what you've described, the criteria for Antiphospholipid Syndrome don't seem to be met. You haven't mentioned having a thrombosis (an artery dissection isn't a diagnostic criterion for APS) or a history of pathological pregnancies. Furthermore, while there is a certain genetic predisposition for Antiphospholipid Syndrome, there aren't "classic" genes where a single mutation triggers the disease. It seems odd that you were told a genetic mutation was the cause in your specific case. It sounds more likely that you are dealing with thrombophilia, which is not the same thing as Antiphospholipid Syndrome.

Something doesn't quite add up here.

Which type of Vasculitis are we talking about?

brightgull95 said:...if the directive is lifelong anticoagulants (Warfarin or some DOAC), then you take them for life.

For patients dealing with Antiphospholipid Syndrome, we don't recommend DOACs. In fact, certain drugs in that class might actually increase the risk of thromboembolic events in these specific cases. To clarify for those following along here: when it comes to this syndrome, the gold standard remains classic oral anticoagulants—specifically Vitamin K antagonists—or heparin. Not DOACs.

Dear Felix,

Look, my intention here wasn't to play doctor or prescribe some specific treatment plan. My whole point—the entire reason I even posted this—was to remind everyone that you absolutely have to follow the directions given by your own attending physician.

My mom dealt with antiphospholipid syndrome, heparin-induced thrombocytopenia, and frequent venous thrombosis—the first one hit her when she was 50. Doctors were actually questioning if she might have multiple myeloma, since thrombosis can be such a common red flag for cancer. But it wasn't myeloma; she had two separate bone marrow biopsies at the hospital, and both came back totally normal. She saw her hematologist regularly for checkups every two or three months, and we always made sure she got her bloodwork done at the hospital, because honestly, the local Community Health Centers and private labs just can't seem to get the platelet counts right. She was on Martefarin, and for that first thrombosis, they started her on Pelentan.

Maria Fisher46 said:Ma'am,

Based on what you've shared, there aren't enough indicators here for Antiphospholipid Syndrome. You haven't mentioned having a thrombosis (dissection doesn't count toward the APS criteria) or any history of pathological pregnancy. Furthermore, while there might be some genetic predisposition involved with Antiphospholipid Syndrome, there isn't a specific "classic" gene mutation that causes the disease. So, it seems odd to me that you were told this was due to a genetic mutation in your case. It sounds more likely that we're looking at thrombophilia, which is definitely not the same thing as Antiphospholipid Syndrome.

Something doesn't add up here.

Which Vasculitis are we talking about?

Thank you all so much for taking the time to reply.
I'm actually out of town right now, not in the US. After being discharged from the hospital following my carotid and vertebral artery dissection, I was put on Warfarin. Following a color Doppler checkup, my neurologist requested that I go to a Coagulation Clinic for blood work.
I don't understand these lab results at all—nothing makes sense to me.
The diagnoses are:
1. Suspected secondary Antiphospholipid Syndrome (APS) with positive Anti-cardiolipin and anti-β2-glycoprotein I antibodies (IgG) at
2. Suspected systemic vascular disease (e.g., Vasculitis) with elevated RF and elevated ANCA
3. Hyperhomocysteinemia
4. Dissections of the carotid and vertebral arteries

The doctors explained it to me in layman's terms, basically saying I wasn't born with this. I have no complaints about their care; they truly did a thorough job, checking me from head to toe. MRI, color Doppler, lumbar puncture—they even performed an endoscopy and an abdominal MRI. They were likely trying to see if there were any other dissections. Everything went fine. My RF and CCP levels are high, and they kept leaning toward Lupus. They couldn't figure out why these dissections happened since I'm still young (35 years old).
Today, my neurologist told me that I'll be on this medication for life. I have to repeat the tests at the Coagulation Clinic at the beginning of July.

Oh, and because of diagnosis number 3, they also have me taking B-complex and folate, on top of my Iron supplements and Vitamin D.

Donna Lopez79 said:I really want to thank everyone for taking the time out of your busy lives to give me such detailed responses. It means a lot.
I’m currently out of town—not even in the States right now. Ever since I was discharged from the hospital following that diagnosis of carotid and vertebral artery dissection, I've been on Warfarin. Now, after my follow-up color Doppler scan, the neurologist is insisting that I go get bloodwork done at a specialized Coagulation Clinic.
I honestly don't understand a single word of these lab results, but let me tell you one thing—absolutely nothing in here is within the normal range. Not one bit!
The diagnoses are:
1. Suspected. Secondary Anti-Phospholipid Syndrome (APS) confirmed by positive Anti-cardiolipin and anti-β2-glycoprotein I antibodies (both IgG).
2.Suspected. Systemic vascular disease—think things like Vasculitis—when you’ve got elevated RF and high ANCA levels... it's a massive headache. It's one of those diagnostic minefields that keeps doctors up at night.
3. Hyperhomocysteinemia
Dissections of the carotid and vertebral arteries... honestly, where do we even start with this mess? It’s one of those topics that just keeps coming up, and frankly, it's enough to make anyone's blood boil. You look at the sheer complexity of how these vessels can just... fail, and it's infuriating. I was reading some discussions earlier—and yes, I have thoughts on what people are saying—and it feels like we're constantly dancing around the actual severity of these events. When you're dealing with a dissection in the carotid or the vertebral artery, you aren't just looking at a "medical issue"; you're looking at a high-stakes gamble with someone's neurological future. It’s volatile, it’s unpredictable, and quite frankly, it’s terrifying if you actually stop to think about the mechanics of it all. The way these tears happen, the way the vessel wall just gives way—it shouldn't be this common, yet here we are, discussing it like it's just another Tuesday at the clinic. It’s maddening. Every time you think you have a handle on the risk factors or the management protocols, something shifts. It’s a constant battle against the clock and the anatomy itself.

Wait just a second while this...SuspectedIt doesn't just vanish from the diagnostic picture, because that’s only when things become an official, confirmed diagnosis in the Federal Republic of Germany—and almost certainly in America or Switzerland, too. Until that point, it's frequently nothing more than a mere assumption. And for what it's worth, I'm not living in America either.

Look, you’re going to need a much deeper dive into the specifics of these medications and how they relate to Vasculitis. Honestly, one of my colleagues over at the clinic will be able to walk you through that far better than I can. From where I stand—and believe me, my own understanding is pretty limited here—it isn't exactly unheard of to see these symptoms manifesting at your age.

Donna Lopez79 said:They basically told me, in the most layman terms possible, that I just wasn't born with it.

Donna Lopez79 said:So, my doctor just dropped the bombshell: it’s a genetic mutation. Just like that. One minute everything seems fine, and the next, you're staring down a diagnosis that's written right into your DNA. It's infuriating how these things just pop up out of nowhere, completely rewriting the rules of your health without even asking for permission.

Look, either they did a terrible job explaining things to you, or you completely misread the room when you wrote that this was all down to a genetic mutation. But let's be real—since we're talking about a V.a. diagnosis here, there’s still a very real possibility that you weren't actually born with one of those issues.

Donna Lopez79 said:I honestly can’t find anything to complain about regarding their work. They truly went through me from head to toe at the hospital. We’re talking full MRI, color Doppler, a lumbar puncture—they even went in with a probe right into my heart (I can't even remember the specific name of that procedure) and then did an abdominal MRI. They were basically trying to figure out if there were any other dissections lurking around. Everything felt handled properly on that front. However, my RF and CCP levels came back elevated, and they kept leaning toward a Lupus diagnosis. They seemed completely stumped as to why these dissections would happen to someone my age—I'm only 35!

They basically tore you apart during the exam because they’re looking for any excuse to bill your health insurance for everything. They can even justify the coronary angiography by claiming they were hunting for SCAD (spontaneous coronary artery dissection). And honestly? That really can happen in women your age.

brightgull95 said:Hold off until that "Suspected" tag disappears from the diagnosis. In the US—and almost certainly in the UK or Canada too—it doesn't become an official, confirmed diagnosis until that qualifier is gone. Until then, it’s often just a hunch. And look, I’m not living in America either.

As for the actual antibodies and Vasculitis, another user will probably give you a better breakdown. From my own limited perspective, it isn't unusual for this stuff to show up at your age.

Either they explained it poorly, or you misread them when you mentioned a genetic mutation. But since we're looking at a "Suspected" diagnosis, there's still a chance you weren't actually born with any of this.

They ran all those tests because, frankly, they want to bill your insurance. Even the coronary angiogram can be justified by searching for SCAD (spontaneous coronary artery dissection). That is a very real possibility for women in your age group.

Thanks for getting back to me.
I didn't misunderstand; the doctor explicitly told me today it was a genetic mutation. There it is. They never mentioned anything about it being "suspected"—I had no idea what that abbreviation meant. They just gave me the diagnoses. Lifelong therapy, end of story.
So, what kind of follow-up testing should I expect to actually confirm this?

And look, I guess that’s why we pay into health insurance in the first place—to actually use the services. I wasn't trying to say they should bill the insurance; I meant having a full workup done at the hospital. Honestly, I'm just hoping for a thorough exam and a real conversation with our doctors.
All I know is that I don't know anything, but I'm hoping this medication gets everything running normally.
Also, since you mentioned being abroad... my neurologist doesn't really make his own calls. He just follows orders sent over from the specialists at the clinic—neurologists and hematologists—and he sticks to their notes. It feels weird to me, but whatever...

When it comes to what you should do next, honestly, just pick up the phone and talk to the specialists who were actually treating you—I mean, call the doctors or the hospital staff who managed your case during your stay. They are your best resource here. Like I’ve already pointed out, they’re the ones who actually saw your charts and dealt with your situation firsthand. So, just follow their lead and do exactly what they tell you to do.

brightgull95 said:Hold off until that "Suspected" label disappears from the rest of the diagnosis. In the US—and almost certainly in the UK or Canada too—it doesn't become a confirmed diagnosis until that qualifier is gone. Until then, it’s often just an educated guess. And look, I don't live in the States either.

As for the specific antibodies and Vasculitis, someone else here will probably give you a better breakdown. From my own limited perspective, it isn't unusual for things to show up like this at your age.

Either they explained it poorly, or you misunderstood them when you mentioned a genetic mutation. But since we're dealing with a "Suspected" diagnosis, there's still a chance you weren't born with any of this stuff.

They ran all those tests because they need to justify billing your insurance provider. That goes for the coronary angiogram, too; they can justify it by looking for SCAD (spontaneous coronary artery dissection). That's a real possibility for women in your age group.

brightgull95 said:Regarding next steps, your best bet is to ask the people who actually treated you. Call the clinic or the hospital where everything was handled. They are your primary resource—like I said before, they actually saw you. Follow their lead. Just do what they tell you to do.

Of course I'm going to follow the instructions of the doctors managing me through these confusing, nonsensical diagnoses. And obviously, I'll be turning back to them for answers, because I have to!
I'm just asking questions. This is a forum, right? 😊

Donna Lopez79 said:The diagnoses are:
1. Suspected secondary Anti-phospholipid syndrome (APS) with positive Anti-cardiolipin and anti-β2-glycoprotein I antibodies (both IgG) at
2. Suspected systemic vascular disease (e.g., Vasculitis) given elevated RF and high ANCA levels
3. Hyperhomocysteinemia
4. Dissections of the carotid and vertebral arteries

In layman's terms, they explained that I wasn't born with this. I have no complaints about their work—they truly went over me with a fine-tooth comb in the hospital. MRI, color Doppler, lumbar puncture, they even did an echocardiogram and an abdominal MRI. They were likely searching for any other dissections. Everything seemed standard. My RF and CCP levels were high, so they kept leaning toward Lupus. It didn't make sense to them why these dissections happened while I'm still young (35 years old).
Today, my neurologist told me the therapy will be lifelong. And I’ll be repeating those blood tests at the Coagulation Clinic at the start of July.

Oh, and because of diagnosis number three, they added B-complex and folate to my regimen. I'm also taking Iron tablets and Vitamin D.

Just a brief comment.

Based strictly on what you've shared so far (noting that I haven't seen your full medical file), you don't meet the criteria for antiphospholipid syndrome. Having positive antiphospholipid antibodies just once isn't enough for a formal diagnosis.

Elevated RF and CCP aren't definitive indicators for Lupus, though they can show up there too. Given the other details you mentioned, I'm actually somewhat concerned that the doctors treating you might not be specialists in rheumatology.

Furthermore, the second diagnosis is much more serious here: the suspicion of Vasculitis, especially with a positive ANCA finding.

What strikes me as odd—though I lack the full picture—is being discharged from the hospital under suspicion of such a condition without a consultation from a rheumatologist. Typically, if there is a suspicion of ANCA-associated Vasculitis, we are talking about severe, aggressive conditions. You need exhaustive testing to confirm or rule it out, and once confirmed, the treatment is "heavy-duty," to put it simply. In that scenario, Martefarin, B-complex vitamins, Iron, and Vitamin D won't touch the problem.

Regardless, you absolutely need to see a rheumatologist for further evaluation as soon as possible. It's surprising to see your care managed by a neurologist consulting with a hematologist, only for you to be released with two potential rheumatological diagnoses hanging over your head.

Maria Fisher46 said:Just a quick thought.

Based on what you’ve shared so far—and look, I’m speaking without seeing your full medical file here—you don't actually meet the criteria for Antiphospholipid Syndrome. Having positive antiphospholipid antibodies just once isn't enough for a diagnosis.

Those elevated RF and CCP levels don't necessarily point toward Lupus either, though they can show up there too. Honestly, looking at everything else you mentioned, I’m starting to worry that the doctors treating you might not be particularly well-versed in rheumatology.

Even more concerning is that second diagnosis: the suspected Vasculitis, especially given the positive ANCA finding.

What puzzles me—though again, I don't have the whole picture—is how you were discharged from the hospital with a suspicion of that diagnosis without even seeing a rheumatologist. If there's any doubt about ANCA Vasculitis, we're talking about serious stuff. You need an exhaustive workup to confirm or rule it out. If it's confirmed, you're looking at "heavy-duty" treatment, to put it bluntly. In that scenario, Martefarin, B vitamins, Iron, and Vitamin D aren't going to cut it.

Bottom line: you absolutely need to see a rheumatologist immediately for further testing. It strikes me as bizarre that your care was being handled by a neurologist consulting with a hematologist, only for you to walk out with two potential rheumatological diagnoses hanging over your head!

Thanks for getting back to me.
I was actually discharged from the hospital a year and a half ago. Back then, my RF and CCP were high, and the doctors kept leaning toward Lupus. The whole team evaluated me, but I left the hospital without a definitive diagnosis—just the carotid and vertebral artery dissection, a prescription for Warfarin, and instructions to follow up with a rheumatologist. These other diagnoses were added later based on subsequent blood work.
Because of all the chaos with COVID and the shortage of specialists, I didn't actually see a rheumatologist until March of this year. She ran some tests and had those diagnoses right in front of her. They said they'd call us for an appointment, but when we didn't hear anything, we called them. They told us that regarding the rheumatology side of things, I didn't even need to come in because everything looked fine, and they'd sent my results to my primary care doctor.
Now I'm doing more blood work at the Coagulation Clinic, but reading some of the responses here, I'm starting to realize that nothing is really changing.
If you want, I can send you the lab results from the hospital and the ones used to assign these diagnoses. And if you have any other advice, please, tell me. I can clearly see that I'm just spinning my wheels here.

Thank you so much.

Donna Lopez79 said:Thanks for the response.
I was discharged from the hospital about a year and a half ago. At that time, my RF and CCP levels were elevated, and the doctors kept leaning toward Lupus. The whole team worked me over, but I left the hospital without a definitive diagnosis—just a carotid and vertebral artery dissection, a prescription for Warfarin, and orders to see a rheumatologist. These specific diagnoses were added later based on follow-up blood work they performed.
Due to the chaos with COVID and the shortage of specialists, I didn't actually see a rheumatologist until March of this year. She ran some labs, and those diagnoses were already sitting there in front of her. They told us they would call to schedule an appointment. When we didn't hear anything, we called them, and were told that from a rheumatology standpoint, everything was fine—that I didn't even need to come in, and that she had sent my results directly to my primary care physician.
Now I'm back at the Coagulation Clinic getting blood drawn again, but looking at a few of the replies here, I'm starting to realize these results aren't going to change.
If you'd like, I can send over the hospital blood work and the subsequent labs that led to these diagnoses. And if anyone has any advice, please, let me know. I feel like I'm just spinning my wheels.

Many thanks.

Ma'am,

With every post, you bring new information that flips the situation 180 degrees. Your case is highly complex. You've seen many different doctors and have a mountain of medical documentation; frankly, you won't get a concrete diagnosis through an online forum.

I'm not entirely sure I follow. You mention a rheumatologist, but looking back at your posts, it's still unclear whether that specialist actually sat down and performed a thorough physical exam. It seems like the conversation keeps circling back to paperwork and lab results being shuffled between doctors while you're simply being scheduled for more blood draws.

A diagnosis for rheumatic diseases—whether it's Antiphospholipid Syndrome or Vasculitis—cannot be made solely from lab reports and paper trails. You need a comprehensive clinical evaluation, a deep dive into your medical history dating back to childhood, and beyond just blood work, various imaging studies and, frequently, a biopsy.

Furthermore, it is highly unusual—almost contradictory—that your treating neurologist is noting suspected Antiphospholipid Syndrome and Vasculitis, while you're stating that from a rheumatological perspective, everything is perfectly fine and the results have been passed along.

If everything is fine from the rheumatology side, why is the neurologist adding new suspected diagnoses instead of clearing them?

As I've noted before, based strictly on what you've shared, I don't see sufficient evidence for Antiphospholipid Syndrome (a positive antibody test alone isn't enough for that diagnosis, and I must reiterate: you cannot diagnose rheumatic disease from paper alone). As for Vasculitis, I wouldn't bet on it; even with positive ANCA antibodies, large vessel dissections are rare, as those types of vasculitis typically target smaller vessels first—though I recognize there are documented cases of carotid dissection in patients with ANCA Vasculitis.

Then there is the lingering question regarding Lupus, which comes up constantly. Based on RF and anti-CCP findings, though in this diagnostic context, ANA is the much more critical marker, not RF or anti-CCP...

Maria Fisher46 said:Listen, ma'am,

Every single time you post, you drop some bombshell that flips the entire narrative on its head. Your situation is incredibly messy. It’s obvious you've bounced between countless specialists, racked up a mountain of test results, and buried yourself in medical records. Honestly? You aren't going to get any real, concrete advice here about what's actually happening. This isn't the place for that.

I’m not entirely sure I follow your point. You keep bringing up this rheumatologist, but looking back through your posts, I still can't tell if they actually sat down and had a real conversation with you, or even gave you a thorough physical exam. It feels like all we ever hear about is paperwork and lab results being shuffled between specialists while they just keep scheduling more blood work.

You can't just slap a diagnosis like antiphospholipid syndrome or vasculitis on someone based solely on bloodwork and some paperwork. It’s not that simple. You need a deep dive—a thorough, exhaustive clinical exam and an incredibly detailed medical history that tracks everything from infancy onward. Beyond the blood tests, you're looking at a massive battery of diagnostic tools: imaging, specialized scans, and quite often, a biopsy to get the full picture.

It’s strange, really. You're claiming everything is fine from a rheumatology standpoint and that all the tests have been sent off, yet you're simultaneously telling me your own neurologist—the one actually managing your care—is noting potential diagnoses for both antiphospholipid syndrome and vasculitis. That is a massive contradiction. One side says you're clear, while your specialist is actively flagging these conditions. It just doesn't add up.

So if everything looks fine from a Rheumatology standpoint, why on earth is the neurologist adding more diagnoses to the list instead of clearing them out?

Look, like I’ve already said—based strictly on what you've shared so far—I don't see enough evidence here for Antiphospholipid Syndrome. Just having positive antibodies isn't enough to clinch that diagnosis. And I'll say it again: you can't diagnose a rheumatic disease based solely on blood work and paperwork. As for vasculitis? I wouldn't bet the house on it. Even with positive ANCA antibodies, large vessel dissection is incredibly rare in those cases; those types of vasculitis typically target the small vessels first, though I suppose there are outlier cases where carotid dissection has been documented in patients with ANCA vasculitis.

And we still haven't cleared up this whole Lupus thing that keeps popping up every five minutes. People keep bringing it up based on RF and anti-CCP results, which is just wrong. If you actually want to talk diagnostics, the heavy hitter here is ANA—not RF and certainly not anti-CCP. Let's get the facts straight.

Thanks again for the response.

Look, I know it. I’m fully aware that nobody here can hand me an official diagnosis. Honestly? I’ve just been confusing all of you, and frankly, the doctors are doing a pretty good job of confusing me, too.

I finally had my appointment with the rheumatologist. She sat there staring at those diagnoses listed right in front of her, just shaking her head—clearly not liking what she saw. Honestly? She told me straight up that my bloodwork doesn't match up with my symptoms. My spine is constantly killing me, but all she did was check my joint mobility and pull some blood. She claimed she’d wait on the labs to decide the next steps and then call me in. Well, they didn't call. After waiting forever, I had to be the one to ring them up. Turns out, from the rheumatology side, everything looks "fine." They sent the results over to my primary care doctor and told me I didn't even need a follow-up. So yeah, the GP has seen those diagnoses I mentioned before. Look, I know perfectly well that the neurologist's findings have nothing to do with these specific diagnoses, but what am I supposed to do? I have to follow their lead.

My apologies if I caused any confusion; I might have been a bit disorganized with my timeline from the start. I'm typing this on my phone, which isn't ideal, but I’d really like to send over my blood work results for you all to see.
Look, my take? They’re probably sitting on their hands waiting for a retest—you know, more bloodwork to back up these supposed diagnoses—before they actually do anything useful. Personally, I’m planning to get a full workup done right here in the States, because honestly, believe me, I am completely in the dark at this point.
It’s been over a year and a half now. A year and a half without a single concrete diagnosis.

INR (quick) 3.46
INR (hepatoquick) 3.52
Quick 20- 70-130 %
Hepatoquick 13- 70-130 %
APTT 51.2 25.1-36.0
Factor VII 12- - 65-160
Factor X 7- - 65-150
Protein C 39- - 73-150
Protein S 19- - 60-130
Protein S free (immunological) 18 - - 60-130

Antinuclear antibodies neg.
MPO AK 13.9+ + 0-6
PR3 AK 10.8 + + 0-5
Cardiolipin - IgG antibodies 33+ 0-20
beta2-Glycoprotein -I-IgG-Ak. 32+. 0-20
Rheumatoid factor IgM. 51.5+. 0-4.9

PAI -1 4G/5G HET
ACE Intron 16 I/D. HOM
FXI rs2036914/T10364C. HET
Homocysteine 18.2 5.0-15.0