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What can I expect with Antiphospholipid Syndrome (APS)?
Autoimmune Diseases | Last Active: May 16 11:41am | Replies (188)Comment receiving replies
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.
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@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).