Antiphospholipid: Weird symptoms, don't understand what’s going on

Hi, everyone.

I just recently requested an appointment with Mayo Clinic and am waiting to hear if they will “offer” an appointment. I was diagnosed with antiphospholipid antibody syndrome in 2018 after a pulmonary embolism. I have been experiencing a variety of neurological symptoms over the last 10+ years, including constantly feeling imbalanced, dizziness, occasional vertigo, and chronic mixed headaches and migraines. I’ve been seeing specialists in my area and feel confident in their care with the blood clotting aspects. I’m on Coumadin and Plaquenil. For migraines, I’m also prescribed Emgality and Nurtec. I’ve seen ENTs and had a full work up several times, and they did not find any inner ear issues. However, some specialists have noted to me that they think it’s quite likely all these neurological symptoms are related to APS, but nobody I’ve seen knows how to treat these. This is what I would like to get treatment at Mayo for. For whatever it’s worth, my husband works at Mayo Clinic and our health insurance is the Mayo employee plan. He works remotely so we’ve never been seen at Mayo before.

Part of me is steeling myself to be rejected for the appointment request. My experience has unfortunately been when many doctors encounter a very confusing medical issue, they pass you along as a patient. Hoping for good news that I’m offered an appointment.

Has anyone here with APS experienced any other neurological symptoms, like imbalance, vertigo, or migraines?

@leb717, welcome. I moved your message about antiphospholipid antibody syndrome and experiencing neurological symptoms like balance issues, vertigo and migraines to this existing discussion:
- Antiphospholipid: Weird symptoms, don't understand what’s going on https://connect.mayoclinic.org/discussion/weird-symptoms-no-clear-understanding-of-whats-going-on/

I did this so that you can easily connect with fellow APS members like @elizabeth513 @nicholas94 @mskeith @lininmd @wig @paktoledo and others.

Have you seen a neurologist locally too?

@leb717, welcome. I moved your message about antiphospholipid antibody syndrome and experiencing neurological symptoms like balance issues, vertigo and migraines to this existing discussion:
- Antiphospholipid: Weird symptoms, don't understand what’s going on https://connect.mayoclinic.org/discussion/weird-symptoms-no-clear-understanding-of-whats-going-on/

I did this so that you can easily connect with fellow APS members like @elizabeth513 @nicholas94 @mskeith @lininmd @wig @paktoledo and others.

Have you seen a neurologist locally too?

My son has APS too. Diagnosed 2007 after a TIA. He had to have some rehab for at least 6 mos. Went back to work. He has had at least 3 other TIA’s thru the yrs and with follow up rehab at Shepherd Pathways. He has been on warfarin since 2007. He has had 2 heart surgeries due to severe stenosis of his aortic valve. First surgery 2020 was open heart and they replaced with pig valve. Second heart surgery, May 2024 for severe stenosis of his aorta valve and they replaced it with mechanical aortic valve. Since 2007, he has been diagnosed with diabetes 2, in stage 4 chronic kidney disease, has high blood pressure, seizures, and now vascular dementia. He is 54 yrs. I believe that the APS is a significant player in all his medical issues especially his aortic valve. However you can’t get his doctors to agree that APS is cause of all this. He has had a total of 4 TIA’s since 2007. He just had to retire from his job due to his peripheral vision not adequate for driving due to optic neuritis, inflammation/infection of small blood vessel bleeds. He woke up morning of July 4 and was totally blind. He regained most of his sight, however does not meet state “peripheral vision”requirements. He takes numerous drugs for all these med issues. He most likely will need dialyses of his kidneys in about a year or a donor kidney. His memory, cognitive ability has definitely been affected. He basically needs 24/7 care. Have your cardiologist do a echo of your aorta valve. My son is taking 7.5mg of warfarin every evening. And his INR needs to always be between 2-3. I believe the APS (thick blood or like a vegetative growth) collects in his aortic valve over time and causes the severe stenosis. My son has his own INR test equipment provided thru his health benefits and he’s required to test his INR every week and call his results into Acelis who will report to his doctor. If out of line, his doctor/nurse will advise him to adjust his warfarin dose to get his INR back in range for him. You might want to ask your doctor to order a echo of your heart valves and major aortic arteries. Hope you get some answers soon.