Hello, this is my first post. I am not officially diagnosed with APS yet. I had a stroke while on vacation. I am 49 years old, had flown two days prior to the CVA and was on an antiviral for shingles around the right side of my torso. I was in Orlando and had ridden roller coasters for two days, as well. My BMI is under 25, cholesterol under 200 and my blood pressure is usually 100/60. I had a healthy pregnancy at 37 followed by two early miscarriages after I turned 39. I have a life long history of migraine with aura, a scintillating scotoma and meineres.
During hospital work up I was negative for beta2 glycoprotein 1 antibodies, LA and CL antibodies. I was negative to any genetic clotting disorders aswell. Pretty much all serum tests were negative except for a slightly positive ANA. However, they did find a very substantial PFO with an ASA as well. I had curtain effect at rest, indicative of a Spenser grade +5.
While in the ICU, on my fourth day I suffered another stroke. Due to this the team of neurologists and cardiologists decided to close my pfo before my thirty day a fib heart monitoring. They rushed this because I needed to travel home to my home state via a two day car trip, was not allowed to fly yet and they sensed my anxiety about having another stroke.
When I got home after a few weeks I was able to find a stroke specialist and a structural cardiologist at home for follow up. I wore a heart monitor for thirty days, no afib as far as I know. The neuro here did want to run some tests again and ordered another APS screening. This time two were still negative but the Beta 2 glycoprotein 1 was extremely high at >150. I had a flu shot in the Orlando hospital the day after the first beta2 test.
He also took a follow up ct with contrast which showed " a small irregularity or a short beading of the distal ICA which might be secondary to Fibromuscular dysplasia". This was not seen on any other scan in Florida. I had two ct scans , two Mri's of the head and one MRA of the pelvic sand neck there.
I also was found to have insufficient vitamin D, 125 and low b12, 385. My thyroid tests were normal. I will be retested for APS antibodies, my ANA and vitamins in March.
Presently I am on aspirin, 325mg, Lipitor, 40mg and plavix, 75mg. I take vitamin d supplements too. I am hoping my antibodies were a transient result of my shingles infection or flu shot.
Has anyone had their APS antibodies disappear. I am baffled by the difference between the two tests taken only four weeks apart. Also if the next test is negative they will most likely keep me on just aspirin or plavix not both. Would that be safe while I once did have antibodies, a history of miscarriages and stroke?
Sorry so long and TIA, as in thanks not a mini stroke
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What is PFO with ASA....ICA = internal carotid artery? May be im premature here, but why is there not an anticoagulant if you had two strokes... i would question that... being as they are not sure what caused the stroke? Or did I miss something? I realize you had heart surgery but im not sure why they arent anticoagulating you. Aspirin and clopidogrel are anti platelets and this may not be enough.
My other question is if they heparinized you during the surgery which i am assuming they did... maybe this caused the negative result? You have me miffed... i wish i were more helpful. Best of wishes, Cindy. Where in the states are you now?
A PFO is a hole in the heart and ASA is an atrial septal aneurism. Protocol for cryptogenic stroke is generally aspirin and plavix and warfarin is reserved for patients who have a-fib or clotting disorders like APS. Presently I have not met the APS criteria nor do I have afib. So antiplatlet therapy and the heart surgery statically are keeping my brain protected from recurrence.
I had my second stroke while in the hospital and at that time I was on heparin shots in my stomach once per day plus aspirin. After second stroke I did have four days of heparin drip prior to heart procedure. But the heparin was after first negative test not before. I had TPA the day of first stroke but no heparin prior to first tests.
I am in ct, am seeing doctors at Yale. I see a rheumatologist in a March whose work on gut bacteria has been posted on this site as recently as two weeks ago, so I feel my team understands APS well.
Hi, it looks like your PFO (A patent foramen ovale (PFO) is a hole in the heart that didn't close the way it should after birth. During fetal development, a small flap-like opening — the foramen ovale (foh-RAY-mun oh-VAY-lee) — is normally present in the wall between the right and left upper chambers of the heart (atria). with ICA (atrial septal aneurysm) is what caused your stroke?
Its good that this was repaired/closed.
Yes we can go in and out of positive/negative results and your flu jab could have caused some inflammatory blood result.
The blood tests need to be repeated 12 weeks apart.
The key here is anticoagulation, which you are on, how are your migraines?
I suggest you get referred to an APS specialist to see if they can look at the whole picture?
We have a list under pinned posts top right hand corner.
Wheres home? So others closer to you can recommend a specialist?
Thank you for you help too! I do have an appointment with a rheumatologist who is pretty renown for his studies on gut bacteria and APS, I might be taking part in a study he is overseeing and my neurologist is also part of this study at Yale.
After my stroke I had 8 separate scintillating scatomas before my surgery. Since closure, on Nov 2, I have only had one! And it was with in two weeks of closure. I have had lots of headaches though but I think more from neck tension. My anxiety is quite high.
Please look at our charity website, which has a list of international specialists on the front! ghic.world/ It is not unusual to go in and out of positive/negative testing, a lot of us have had this happen. You definitely need a designated specialist who fully understands this condition, especially in view of anticoagulation etc. I hope more than the TSH was done when your Thyroid was looked at, as most of us do far more detailed tests which are usually needed. We often order our own. MaryF
Thank you. My gp did only a TSH, 3RD GENERATION W/REFLEX TO FT4 test in December but I see Dr Martin Kreigel, a rheumatologist who conducts numerous studies on APS and the gut relationship, in March. I expect a lot of more in depth testing then. I will also have a third antibody test in March, at which time my neurologist will decide on if a hemotologist to over see warfarin is needed.
I really do not have any other symptoms at this time, I had no symptoms other than miscarriage and migraines before my strokes and both of those could be explained by other causes such as my advanced age and my large PFO with ASA.
My migraines have subsided sense the PFO closure as well. I have headaches now only after my shoulders tense up due to my anxiety. These headaches are tension like not one sided like my migraines were. So the aspirin, plavix, statin, vitamin d and closure seem to be protecting me presently.
I think I am in a holding pattern now. I am assuming my neurologist will not treat seronegative APS but I assume the rheumatologist will if he believes APS is the cause of my issues and he than would send me on to hematology. It just takes months to see the APS specialists for there are very few in my area, even with a well respected research Ivy League medical school and hospital ( Yale) within ten minutes of me
Unfortunately still the Thyroid testing will be scanty, a lot of us on here order our tests from alternative companies, as proof as to what might be going on, we have access to a few suggestions. MaryF
My husband has a great endocrinologist, when he had rectal cancer the staging scans found tumors in his thyroid, I could book an appointment to have more done if Dr. Kreigel does not investigate fully. With my sister's hypo parathyroid issues I should qualify for more testing. I am not sure if I can order tests with out a doctor's script even if I pay for them. What tests do you suggest?
You can order them from somewhere like Medichecks and also Blue Horizon, This package is good, it does not have a Reverse T3, which I would do if I was on Levothyroxine, but if you are not on Thyroid meds, this is a good pack as it also contains an Active B12 test, which again is more accurate than the main stream one used! medichecks.com/thyroid-func... and a cheaper one, if you don't want to look at your B12, medichecks.com/thyroid-func...
how do you order your own thyroid tests ? My gp does mine annually and just does the basic T3 I believe. I am trying to make all the connection to the sticky blood/lupus/thyroid and a couple of other things. I know there is a relationship with the lupus and APL but not sure how the thyroid factors in.
I apologize if I am jumping in on someones post here, dont mean to be rude, but I have so many questions as I read each of these.
I am very sorry about your recent experiences. So scary. I also have PFO with low level anti-cardiolipin antibodies. I go to a neurologist who specializes in stroke prevention, and I am happy to give you her name if you message me. Because you have already had a stroke, it sounds like they are trying to figure out if it was caused by the PFO or APS or both. Did they tell you the vaccine causes a positive result? I imagine you are under a lot of stress with all the uncertainty. Wishing you the best. K
Thank you. Right now I find my neuro very knowledgable but hard to book. He is a stroke specialist and a researcher as well.
Even with a PFO and possibly APS I would still fall under cryptogenic due to my age, no evidence of a DVT or arterial clot source in Doppler nor MRA and no other risk factors.
I was not told that the vaccine could raise antibodies I just suspect that viruses or vaccines might. My Neuro here in Connecticut did say they like at least twelve weeks between tests because things can affect numbers but he did not specify what things.
I am seeing a neuropsychologist for my anxiety now. She diagnosed my with PTSD and is treating me with CBT mindfulness and it is helping so much. I am now walking and talking much better as well. I only freak out when my carpal tunnel makes my hands numb at night. I wake thinking I am having another stroke. But it subsides with a change of position.
Anyone would have PTSD after what you have been through. Glad to hear you are in good hands. Sounds like they are exploring every possibility. They are clearly watching you very carefully. Good for you about taking advantage of psychological help. CBT should really help. I see you are in Connecticut. We are neighbors.
Do you have a hemotologist that you like? If the next test is still positive I will need one and I have not found to many who specialize with APS within Yale. My husband's oncologist/ hemotologist is experienced with warfarin patients but not APS specifically.
I have not had a clot so I do not see a hematologist. My antibody is association with a lupus-like connective tissue disease. I would be happy to ask my rheumatologist of over thirty years who he sends his patients to. These antibodies come and go, and you may have to be tested periodically.
The immune system is so complex and we are still familiar with only the tip of the iceberg. Antibody levels go up or down depending on .... a recent infection..... a vaccine...... a mood ........ a food that didn't agree with your microbiome resulting in a "leaky gut," ..... or that man who sneezed right besdeyou as you waited in the check-out line at Krogers. Hence the criteria for re-checking after 12 weeks. But (not to further complicate thing) there are some people who are diagnosed and effectively treated for APS who do not have the blood test antibody markers that we recognize! They earn the diagnosis "seronegative." But it does sound like you are on your way to a diagnosis.
Having a stroke can be scary; I had several in that terrifying time leading up to a diagnosis. What made my experience even worse was the attitude of most local doctors I saw here in Charleston WV. I heard one ER doc say (he didn't know I could hear him,) "So her BP and her cholesterol are both low, not overweight, in her 40s -- she is obviously a nut job and she is faking her symptoms."
Would someone tell me how I was doing that -- the slurred speech, the droopy half of my face? I could patent the procedure and I'd be a millionaire in a week!
Hang tight. You're on the road. And, as an avid hiker and swimmer I can assure you that with daignosis and treatment your life can certainly go back to your former normal.
Thank you both sticky and Gina. Your stories offer me so much hope!
A pfo also is found to be related to migraine with aura and meineres too, so another confusion. I guess I am sort of hoping to avoid warfarin. I love kale, spinach and cranberry juice. Plavix and aspirin are easy to live on. But my main hope is to best protect my brain.
As a side note it is so reassuring to know others are a few years out from their strokes and are living their lives as well as possible with a serious disease like APS. My greatest fear after the positive antibody test was not being able to live my life well. Fear of recurrence and death have shadowed my otherwise lucky recovery strides.
Firstly, “what a roller coaster ride” this has been for you...
I am so glad you found this site.
It sounds like you have found a great team of specialists. I am very encouraged to hear the proactive investigation and measures that were taken in your care.
I am slightly concerned that researchers will stick tight to the diagnostic lab criteria, which states the need to ,” persistent and high positive values” for one of the three APS tests. Initially it is required to have them test positive twice 12 weeks apart, as you already know.
Like Sticky Blood Mentor, I tested positive twice initially, the 12 weeks apart, then immediately , a week later was hospitalized with a large DVT. Ion the hospital my antibodies were negative. This initially caused problems for some doctors.
I did have a strong family history of this disease, and I myself had a classic “ clinical presentation” with years of escalating , text book classic symptoms.
I didn’t take long for doctors to realize that the very ill and clotting patient present before their eyes trumps the fluctuating sample in a vile under the scope. The test kits have their limitations, and this is the bane of APS researcher’s current existence. Better detection kits are currently being developed ( fingers crossed for success).
I continued to clot and clot ( don’t worry- I hesitate to tell you that because I am absolutely NOT the norm- my San Antonio doctors - sent me to London to help identify why ) and Dr Hughes kindly co -consulted on my consult.
He told me I was text book classic of a very severe case. He called it a ,” full house,” meaning multiple organs / systems are involved.
My doctors don’t test my antibodies anymore either- they are more often positive than not.
Let’s not cross any bridges until we come to them. Again, it sounds like you really do have a good team. I am encouraged so far by what I’m hearing, but I’d like you really think about your family history in terms of possible auto immune disease. After having a thorough listen to:
and perhaps asking family members what they might remember about dear old aunt Marge...come to think of it... didn’t she have a lot of miscarriages? I seem to remember our great aunt saying something like that? And those awful migraines she always had? It’s hard to remember... she died so many years ago in her early 50’s of either a heart attack or stroke. No one really knows for sure...
Again, I think it sounds like you are dealing really well with this. I think we can learn a lot from you, so thank you for sharing with us! I’m very interested in awe of how our minds and intellects pervalil!
Thanks Kelly! I am so sorry to read about your refractory case how scary. I hope they can find a suitable treatment and soon.
My mother had Von Wilobrans, a bleeding issue, and multiple miscarriages so there is a possible history. She too has migraines but with out aura. My paternal grandmother had later life strokes but not until after 75 and had afib. And my sister has a parathyroid disorder. I think in my gut I feel warfarin is in my future I just am hoping the strokes were the PFO and all has been "fixed"
My strokes caused mostly cognitive deficits. Servere aphasia, which I am recovering from, and slower processing abilities. This was far scarier for me than the right sided limb weaknesses. But I am fascinated how the brain can reroute itself. If I reuse a forgotten name, fact or word three times it seems to stick now. I also started a new job, I interviewed for it with my aphasia still very presentable, and have been able to learn and remember the names of 35 children within a week of starting. The mind is so complex luckily!
Warfarin sounds very daunting, but really it isn’t. It’s a bit of a hassle and a learning curve initially, but very minor. Once you get it , you get it! We will help you and provide you with great resources.
For example I suggest you order a book by Cath Atkins called Eat on Warfarin. She is out of Scotland. She also has a blog I think you should have a look at. You would be very inspired to hear her story! She was young- 40’s on holiday- had a... stroke!
They key is consistency with you diet. You do not have to forego greens- just stay steady- and learn how to use them along side your warfarin to make adjustments to your INR. ( your INR is the measurement of the thinness or thickness of your blood , but only when on the specific medication warfarin.)
As Sticky Blood Mentor said; antibodies come and go...... but what I also am worried about is that you do not get the correct treatment for your APS and I do hope that you do not, under any circumstances, let a Doctor take your anticoagulation away, not even for just a day. So find a Specialist of autoimmun illnesses as you obviously have a family-history behind you.
I still get auras even if I am well anticoagulated. I had pain form carpaltunnelsyndrom when I was not properly anticoagulated 8 years ago, but now when properly anticoagulated they say I should operate my carpaltunnelsyndrom as i have had it such a long time, but why should I, as now it does not hurt at all when properly anticoagulated.
I had no idea there was a connection to carpal tunnel and INR !!!! My carpal tunnel just started in the last 6 months. Just figured I was bending my arms/ wrists when I sleep. I have gotten splints, but since it seems to come from my elbows, as far as I know there is no splint to keep my arm straight. I have been dealing with all of this for 15 years, been on warfarin, was not aware there are specialists for APL and until 30 minutes ago didn't know there was a connection to the thyroid and all of the things I have just listed. APL/lupus/ partial paralysis/ possible stroke/no stroke/possible stroke (depends on who you ask), thyroid issues etc. Now I am reading about others with carpal tunnel All of these light bulb are going off in my head. I probably look like a large lit up Christmas tree about now. I am over whelmed with all this new information I have read in the last hour while combing through here. I know I need to read more books, posts, the pinned posts. I I am so glad I happened on this site while looking to see if I can stop taking my warfarin and just take Omega 3's since they thin the blood as well. Its 3:30 in Texas and my head is going to catch on fire if I take in any more info and have more light bulbs go off. So I will have to figure out a good starting point tomorrow when I am back on the computer.
Yes I was diagnosed with APS over 15 years ago. I would not just go off with out talking to my hematologist. I was taking Omega 3's for all the benefits until I found out it thins your blood. I would love to go off the blood thinners and just take fish oils, but I am thinking the stickiness of the blood is more of an issue than the viscosity. So I doubt that is an option. I have much more to learn about APS. I was not aware that there are APL specialists.
Never stop anticoagulation when you have APS! Talk to a Specialist! Try to educate yourself about this illness. As there are so very few Doctors who are knowledable in autoimmun illnesses and APS in particular we have to fight to get to the right one and get the correct thinning of our blood!
I’m about an hour 20 min north west of San Antonio. The hospital system I use and my specialists are in San Antonio.
My INR is managed locally. That’s all. (local GP/ internist works with a San Antonio GP/ internist and sends notes to him- and he sends on to my Hematologist who links to all other doctors)
Sometimes Carpal tunnel is just carpal tunnel. It is a very common condition in both those with disease and those with out. Causation or coincidence is hard to prove. Seeing a neurologist to look into nerve conductivity tests and blood work is the best place to start figuring out what is going on with you. Always confer with your doctors before adding supplements or going off meds, please.
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New here, have \"mild\" APS?
I am new to this aps world
Just diagnosed with APS
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