What can I expect with Antiphospholipid Syndrome (APS)?

@bjbail70, it sounds like neurological symptoms for your son. I, too, have pain, numbness, weakness, burning, pins and needles, etc. hands/feet and get a painful, burning rash on chin/upper lip. There is something called burning mouth syndrome that you may want to look up. The hands/feet could be small fiber neuropathy or endothelial/microvascular dysfunction. I am 54 and dealing with very similar things as your son.

Hello @bjbail70, I would like to add my welcome to Connect along with @dlydailyhope and others. @dlydailyhope mentioned burning mouth syndrome as something to look up. I thought I would share a search link for Connect that lists the discussions, comments and more on burning mouth syndrome - https://connect.mayoclinic.org/search/?search=burning+mouth+syndrome. You can also type in other conditions and terms for searching to connect with other members with similar symptoms.

@kittyk1178 I really understand your being terrified because your blood clotting has changed. But it’s better to be cautious so you can safely monitor yourself. Set up a list of things you will do every day to cut the incidence of clots forming. Many of those things are in the article I included here:
https://www.webmd.com/dvt/blood-clots
Some things not mentioned but helpful are: don’t cross your legs (this puts the weight of one leg onto the other), have your feet/legs on a footstool when reading or watching TV, don’t have tight elastic on your stockings or cuffs of shirts, get up and walk during commercials . . . . .
My husband was recently diagnosed with MPS, another blood clotting disorder. I’ve told him the same things I told you. If I know he hasn’t had a good walk, i make him get up and we go walking. And I remind him frequently to drink water. I, too, have an autoimmune disease, so I make lists that keep me on track.
I also included some pictures of how clots form. Lovenox and coumadin are the 1st line drugs for blood clots but they require weekly blood work and the other, newer drugs are much easier to use.
You’ve had APS for years and this weekend a PE developed out of the blue. If this was your first PE, then you’re already doing a good job monitoring and taking care of yourself. Now, you can just addd a few more tricks to your medical bag. Calm down and know that you’re doing everything you should and taking great care of yourself.
What do you think you could do to help yourself right now?

Hello it’s sad when I read about APS but I too have APS and so far I’m doing okay with the exception of INR up and down.Now I realize ingredients in some of the moisturizer we used interact with warfarin.I been diagnosed for a few years and have anxiety every time I have to do my INR weekly tests dumbness in my hand and feet there but for me yoga helps me .Was on Plaquenil but I stopped it for now Monitoring yourself is how I deal with this Quite frustrating.Yoga and stretching exercises do helps with numbness .Be well all.

I was diagnosed with APS after I experienced sudden hearing loss first in one ear, then in the second. The loss is greatest in the lower frequencies, about 70% (reverse slope hearing loss). The cause is blood clots in small veins. I also previously experienced blood clots in the retinas of my eyes, but those cleared after several days. So I'm on blood thinners and have experienced no further blood clots but the hearing loss is permanent. I do not have any of the other debilitating symptoms others describe so I feel fortunate. But I've also never found anyone else who's experienced hearing loss like me. Thanks for listening and best wishes to you all.

@wig
How were you diagnosed with APS? How are you being treated and monitored (what types of medications, etc.)? I have not been formally diagnosed but had APS autoantibodies in 2017 and 2019 bloodwork. The rheumatologist sent me away as “ok” even though I had APS, thyroid (Hashimoto’s) and lupus autoantibodies in my bloodwork results. I had an audiologist confirm hearing loss in my left ear in 2017 (when I was 48) and now in 2024 I have confirmed hearing loss in my right ear (I am 54 now). I am hoping my new rheumatologist will properly diagnose my autoimmune illness for treatment to prevent further decline. I was officially diagnosed with Hashimoto’s when I had a lobectomy to remove a suspicious nodule (via pathology).

It doesn't sound as though your rheumatologist took your APS very seriously. At first, they didn't with me either because it was only one lipid and not severe. (My doctor deduced APS from a test of my lipids). They were clutching at straws not knowing why I'd suddenly lost my hearing. I was put on blood thinners and as I said no apparent further decline in hearing. I'm very sorry about your hearing loss. Did it happen suddenly? Unfortunately there's no way to look into the inner ear so impossible to definitively diagnose blood clots. But I would be interested if your new rheumatologist thinks there could be a connection. I was diagnosed by a team of neurologist, hematologist and my GP. Let me know of any further development. I also have (or have had) a number of autoimmune diseases as well as APS. Crohns when I was young, Reynauds syndrome -- not that serious. Good luck and let me know what develops.

@wig I did seem to lose hearing suddenly. The audiologist suggested for me to go to a good ENT to check for Meniere’ disease since I have new hearing loss, dizziness, fullness in ears, etc. I am also waiting for results from a brain MRI with and without contrast to rule out MS and hope it will show anything else that may be affecting hearing/vision (understand blood vessels should show up and they can see inner ear). I’ll let you know what I learn. Good luck to you managing your health and preserving what hearing you have.

@wig,
P.S. Do you have tinnitus, too? I do and that is also connected to Ménière’s disease. Also, did you get the Covid vaccine and infection? I did and had bad reactions to the vaccine (pain at base of skull/lightheaded on days getting the vaccines), and new chest pain and breathing problems ~1-2 weeks after my 2nd dose of the vaccine. I thought I was having heart attacks (had 4 bad episodes in the morning over 4 months and had to ask my teenage son to hurry up and get me aspirin (couldn’t really yell for help it was that bad of pain). My understanding is the COVID vaccine and infection causes blood clots and endothelial/microvascular damage but isn’t talked about much due to politics and forced vaccinations to keep jobs. It has caused many to get more sick than they were pre-COVID vaccine. I know I got much worse after having both vaccine and illness in 2021.

Yes, I do have tinnitus. A low roaring - like the engine of an airplane. I think it's because I have reverse slope hearing loss. Most people with loss in high frequencies is a ringing. I don't understand fully but it's something to do with the brain trying to mimic the sound it no longer receives. I lost my hearing before covid and am lucky I had no lasting effects from either the infection or vaccines. Although I've stopped having them. I know people who've had terrible effects from covid. A friend developed seizures, someone else rheumatoid arthritis and his wife, atrial fibrillation. But who knows if covid was really responsible of not. Let me know what your brain MRI shows up. Thanks for your kind words and take care of yourself.