Anyone get chorea with aps? - Hughes Syndrome A...

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Anyone get chorea with aps?

Charts profile image
6 Replies

Just wondering if anyone gets chorea with their aps? I haven't been diagnosed yet waiting for my 2nd test. I have been having these weird facial tics and arm/hand movements, usually followed by a seizure. Its just battling whsts happening to me. Then when I test positive for b2 glycoprotein and thought I may have aps I thought this might start making sense to me. Seem to be a chemical spray I used on the tiles yesterday that triggered this. Can aps cause triggers from inhaling a chemical??

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6 Replies

I wonder if I do. I have a few involuntary jerks which get more pronounced when I'm very tired. However the issue for me, which I believe might be a form of the chorea like movements is a VERY UNCOMFORTABLE RESTLESS UPPER BODY SENSATION, a type of pain. It's unbearable. This restlessness wakes me from a deep sleep. The VA neurologist prescribed Ropinoral which helps. however the neurologist ignored the information and resources on chorea like movements seen in APS and simply diagnosed my symptoms as RLS. I have chorea like movements on my list for the APS specialist.

Charts profile image
Charts in reply toRavenWolfnHoofUSA

Wearing myself out is my worst trigger. I just finding it so bizarre that eating peanuts or inhaling a chemical would provoke this!

Skyllark profile image
Skyllark

Yes, my wife has had it for 7 years. She has been doing biweekly plasmapheresis to keep it under control.

Charts profile image
Charts in reply toSkyllark

If you don't mind me asking what would trigger the chorea? Did it just effect her hands movements or more body parts?

Skyllark profile image
Skyllark in reply toCharts

It was triggered buy the swelling of the Basal Ganglia it… but was legs and arms, hands pretty much any moving part…like a slow jittery seizure like movements.

RavenWolfnHoofUSA profile image
RavenWolfnHoofUSA in reply toSkyllark

I'm sorry to hear that. Does she experience really uncomfortable, almost painful, sensations in her body? So swelling of the basal ganglia causes these chorea like movements! WOW. How did they diagnose her and do certain medications increase her symptoms. (I'm sorry to bombard you with questions. Please excuse. I'm desperate to talk about this.)

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