Hi everyone, I was diagnosed with APS with chorea in January and, because of white matter foci, have been started on Warfarin. My INR readings thus far have been 1, 1.5, 1.9, 1.4 and 1.9 yesterday. The haematologist suggested I should be between 2 and 3.
I have arm and leg twitches and writhing movements, but also a feeling that builds up, like a pressure cooker about to blow. It starts in my head and I know I'm going to have a full body "jerk", like I've had the biggest start of my life!
Last night, however, it was a MAJOR one, with no warning. I was arching my back and tilting my head backwards to try to relieve the pain in my back. Jokingly, my partner pushed my head back further to help, and I went into massive spasm. The scary thing was that afterwards, when I was trying to explain what was going on, I was speaking utter gibberish. I was left feeling utterly exhausted, like coming round from a faint, and a real heavy pain in the base of my skull.
I would have gone to hospital but have an autistic son, the logistics last night were not good. This morning, all was fine until I was startled by a sudden noise and it happened again, but to a lesser extent.
Who do I talk to about it all? I saw a rheumatologist once, who diagnosed me then discharged me to the haemo clinic. Other than that, I have a GP!
Sorry this is long, just looking for thoughts/similar experiences 😕