My name is Danielle.. I am 43.. Was in good health. Going to the gym daily and very active. A few years ago I started with isolated incidents of vertigo and migraines. Last year I also had vertigo, migraines, and bladder problems. I was misdiagnosed with MS. Over the past three months I have had severe daily headaches, vertigo, bladder issues, and weird jerky movements. I have just been diagnosed with APS although I have never had a clot. My symptoms have gotten progressively worse and now I have numbness and tingling, heaviness in my chest, back, and limbs. I just started taking Eliquis but feel like my symptoms intensify when I do take it. I am at the end of my rope. Am I going crazy.. I'm a nurse and I work for a family doctor. And all of these bizarre symptoms have made it almost impossible to function. Something else to add is that I'm on high doses of Prednisone because nothing else works for my headaches . Someone, anyone please help.. Has anyone heard of this????

10 Replies

  • Hi and welcome to our friendly site. If you can give us a rough idea of location it can help us answer questions a bit better- for instance are you living in the UK or somewhere else?

    Secondly, it's not unusual for MS and APS to be confused and you certainly would not be the first, however APS has distinct antibodies which I'm guessing you have been tested for and have tested positive for hence your diagnosis. If you have not had a clot yet then that's good, they have diagnosed you in time and the aim now will be to keep your blood from getting too sticky so that you don't get any clots.

    Although it's good that you have been diagnosed, I'm guessing it was by a neurologist. You now need to find a APS/Hughes Syndrome Specialist who is better to treat you as they understand the symptoms so much better. The symptoms you describe are all those that people have and mean that your blood is still too thick. I'm not familiar with Eliquis as a blood thinner, and you probably should talk to an APS specialist about what the normal anticoagulant are available. Normally it is Warfarin or LMW Heparin but just this week another treatment became available called Rivaroxaban which may also be suitable, it's a new oral anticoagulant. Apart from that no other drugs are approved for anticoagulant treatment of APS yet. Your jerky movements are called chorea and again a sign your blood is too thick, hopefully once thinned properly symptoms will improve.

    Please come back and let us know where you are so we can help more if need be.

  • I should just add that I've just looked up Eliquis and its Apixiban which is not approved or tested for APS as an oral anticoagulant yet. Steroids are not normally used as a treatment for headaches either as again it's the sticky blood that's causing you migraines. Once you get on the correct dose of the proper medication, hopefully all these issues should improve but you need to find the correct Dr to treat you who understands this condition.

  • You had some clear advice which I agree with, welcome by the way. MS and Hughes Syndrome/APS are often confused due to the overlapping symptoms. Your location will help us to put you in the right direction for medical care, our members on here are great with localised advice even outside of the UK. MaryF

  • I think u will find many of us have had the same symptoms. Your aps has got to get under control and possibly sle. Most of us have had severe headaches etc

    Your not going mad you just have to believe it

    Just another thought if your not allergic to it and it would seem your not on a prescribed anticoagulant what about trying dissolvable aspirin. It certainly helped me in the early diagnosis is aps.

    Best wishes. Diane.

  • I too have these jerky movements and with walking too.I was diagnosed last year with APS through blood tests and was told it was in my small brain but by the time I started on the warfarin alot had improved which made me question.Apart from odd jerky trips and memory and bladder issues I had been doing fine.I have returned to all of that and worse since an experience in hospital.I agree with good APS specialist. My RA consultant deals with mine and before I got discharged from hospital I was being referred to St Thomas hospital london for APS and a neurological at Sheffield. Badly only discharged with reducing Pregabalin and very been ill with drug withdrawal for three days since.Get yourself a good recognised APS specialist as these good people on here recommend.

    Apart from the jerky movements is your walking fine.I don't have vertigo.

  • Hi


    I've heard of it and I'm rather like you as I was horse riding six days a week and running my business. I started with fatigue, jerky and sore, tripping etc. I was labelled with ms as my mum had it even tho they can't find it on brain scan, lumbar puncture or eyes... Lupus is my diagnosis and I've had Rituximab in Dec last year which has helped. I'm in Physio and my mobility is improving thank goodness tho it's hard and slow.

    I've heard daily low dose aspirin helps with APS.

    Hope that helps.

  • Most -if not all of us here agree that it is crucial to consult with a doc experienced in treating sticky blood syndrome. Clots can be so small that they do not show up on diagnostic screens, but still exist and cause symptoms. It doesn't take much pressure on nerves or in the brain to cause jerks and pains. Also, the classic APLS symptoms are associated with the usual clot locations- heart, lungs, legs. But sticky blood can clot anywhere creating symptoms that are real but do not follow that Classic Diagnostic Picture which doctors( justifiably) take great pleasure in following. Like those Farmer Insurance Commercials currently showing in the US, experienced APLS docs " can cover a thing or 2 'cos we've seen a thing or 2."


  • GinaD "experienced APLS docs " can cover a thing or 2 'cos we've seen a thing or 2." I may have to bottle that!!

  • I would be surprised if the Farmers Insurance commercials are aired in the UK. But they are funny, and available on YouTube.

  • where in the US do you live.....I can perhaps recommend medical centers that specialize in APS and Autoimmune DIsorders

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