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Antiphospholipid Syndrome and Chorea

Posted , 3 users are following.

mariat63
mariat63

Hello, I have recently been diagnosed with this - are there any other sufferers on here? When I am tired or anxious I get the oddest feeling in my head, like a pressure cooker is about to blow! That is my warning that my arm is going to start flailing, or, worse, that I'm going to get a whole body jerk. I've been known to launch a heavy bunch of keys across the room. A year ago a brain MRI showed non specific white matter and I've since had vertigo episodes, blurring of speech, cognitive problems as well as joint pain, inflammation, etc. Anyone else in the same boat? I feel like I'm paddling alone!

2 likes, 5 replies

5 Replies

  • frances85589
    frances85589 mariat63

    Posted

    Crikey!!.Well Maria I have had body jerking my right to left when walking and tics like non verbal torrets.my face jerks and I have these weird stretching face movements. My memory has gone crazy and sometimes when I try to speak it won't come out properly.I gave been thinking for months that all this is side effects from last bioligic medication but rheumatologist yesterday shocks me with saying I have same as you..APS

    Says I have to go on warfarin for life. Are you on this.

    My symptoms have got less but he says it will be variable.what controls yours

    • mariat63
      mariat63 frances85589

      Posted

      Hi France! Yes, I'm on Warfarin. I saw Professor Hunt at Guy's last week, who also confirmed Lupus! I've had a couple of TIAs and a lacunar infarct and a recent MRI revealed a berry aneurysm in the brain! I've been started on hydroxychloriquin, which is supposed to help with all the joint pain I've been having, but should also stopt he movement. She wants my INR to be 3-4, instead of 2-3 but has to check with the neurologist first. Happy days! Where are you? If u can get to London Prof Hunt is the expert on movement with APS and has a clinic at St Thomas's. xxx
    • frances85589
      frances85589 mariat63

      Posted

      I am in North Lincolnshire.So stressed that been diagnosed with yet another disease.its all auto immune stuff.I have Reumatoid arthritis n fibromyalgia plus stomach disorders. I worried on having to have warfarin.it just seems one thing after another controlling my body. Another drug to add to others I'm on.You are first person I have come up with similar symptoms to mine.I was convinced it was from rituximab I was on in June.what annoys me is consultant had these blood test results in Feb and said all was OK as was my brain MRI
    • mariat63
      mariat63 frances85589

      Posted

      I know, Frances, it does seem unfair! APS does seem to go hand in hand with other autoimmune illnesses. That's what makes it difficult to work out which causes what symptoms. I'm in Kent. I've not had any other responses to my post, which tells you how rare this is! Professor Hunt has a special clinic for us! Were you prescribed hydroxycochlorine (Plaquenil)? It needs to come from rheumatologist. There is a good forum for antiphospholipid sufferers on Health Unlocked, and have you seen the Hughes Syndrome website? Very informative. Keep your chin up, once you're getting the right treatment you'll feel better, I'm getting there! Maria x
    • frances85589
      frances85589 mariat63

      Posted

      No am not on Plaquenil.I am on sulfasalazine,pregabalin,prednisolone,lansoprazole..for stomach,because on steroids calcichiew and risondrate,fybogel.

      Have to see consultant in 3 weeks.just had more blood tests. Was just sent away with an old leaflet about APS to read about and told will get me an up to date one next time.

      Have lots questions written down to ask next visit.Good to have someone to talk to.Thank you

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