I recently spent a week in hospital. I was rushed in with a suspected stroke, right-sided weakness and lack of control, and extreme dizziness. No evidence of stroke was found but the symptoms have persisted. The numbness is comparable in sensation to the effects off a dental injection wearing off, and is straight down the midline of my head. Three weeks on it's improving, but not much. The dizziness, likewise, is improving slowly. I still need a walking stick to get around, and am taking anti-dizziness and anti-sickness meds for it. The whole thing was accompanied by severe nystagmus in both eyes (worse in the left), which has improved more that anything else.
Neurology said it was an ENT issue, ENT said it was neurological. In the end they decided to treat me symptomatically.
I have APS and SLE. I take 150mg aspirin daily and was on hydroxychloroquine but stopped that in case it was making things worse (I plan to restart it this week).
Has anyone else experienced anything similar?
Written by
phoenix77
To view profiles and participate in discussions please or .
Hi, when I had a series of TIAs, over 40 in a 2 week period, my left side was completely numb, my mouth drooped as well, I felt it coming on by numbness spreading across my back, the reverse when wearing off. Nothing showed on the cat scans or MRIs. I didnt know I had APS then. I was already on aspirin, (previous strokes) they added clopydogrel, which helped.
You mention you are on aspirin, sounds like you need more anticoagerants? Have you a specialist for your APSs?
Worth trying heperin/clexane trial to see if it helps?
I have an immunologist. He's on the APS recommended list, and I like him. But I'm not due to see him for another few months. I might try to bring the appointment forward. He's been toying with the idea of putting me on warfarin, but I'm not keen.
He's definitely going to tell me off for stopping the hydroxychloroquine, but I want to try to see an optician before I start it again if I can. The nystagmus terrified me. I'm a writer and it made reading and writing impossible.
I might have left it too long now. It's been around four weeks since it started. I passed the FAST test with only right-sided weakness but no drooping. It really fraks me out they don't know what caused it.
I guess you have got neurological symptoms from HS/APS. I think you need an Anticoagulation-drug. They did not find anything on me either as I now know I have micro-emboli. They are too small to be seen on a Scan of today.
If you do not yet have a Specialist for autoimmun illnesses like SLE and HS/APS I think you should try to find one. How long time have you known you have got HS/APS? You say you had a previous stroke. Was it a Neurologist who diagnosed you? They do not always "get" that what we have is too thick blood and we need anticoagulation to live a normal life again.
I have an APS recommended immunologist. I've had a DVT but never had a stroke. My APS was diagnosed 13 years ago after a late miscarriage, and the SLE was diagnosed last year. I think the main thing I'm getting from this is that I need to pay Dr Karim (immunologist) a visit sooner rather than later. I really don't want to go onto warfarin yet, but if that's the best solution then I will. I'd rather do the heparin injections, but I know there are bone density concerns with long term use.
No, not with the LMW Fragmin (dalteparinnatrium). Do as APsnotFab says a second test.
I can tell you that several years ago (my micro-emboli were never seen on a Scan of any sort) I did not either want to take rat-poison (Warfarin) when the different Doctors at the hospital here in Stockholm suggested that .
Stupid of me as the anticoagulation became my lifesaver. All neurological symptoms disappeared. I am tripplepostive (incl Lupus Anticoagulant) with high titres
If you are not Lupus Anticoagulant I suggest you can try with Warfarin but many here use LMW Fragmin (dalteparinnatrium). I use that when my INR goes too low. It can be difficult to keep the INR steady when you have Lupus Anticoagulant as one of the antibodies positive in your body.
Are you under a Hughes Syndrome/APS Specialist, as your medication will need a review, you may need something alongside or instead of Aspirin. If I were you, I would be on the phone, really pushing for an urgent emergency appointment with your specialist and hoping that Warfarin will be started alongside their other recommendations. MaryF
When I first went on warfarin I was kind of freaking out that I was taking this dangerous rat poison. Then my obstetrician, who was the obstetrician in my part of West Virginia who treats difficult pregnancies, described warfarin in this way: " with many drugs, despite the pharmaceutical industry's many tests, bad side effects like cancer or something only show up after years of taking the drug. So we in the medical profession do not know of potential long term side effects when we prescribe these new drugs. Warfarin however has been prescribed for decades. Decades. We know everything it does and we know everything it does not do. It interferes with the uptake of vitamin K and that's all it does. Any "side effects" are actually the logical result of what warfarin does. Which is shorten clotting time by inhibiting the uptake of vitamin K. So my advice would be – when considering possible long-term effects of life long medication I would recommend warfarin. Because we know what it does and we know what it does not do. " ( also it's cheaper than a lot of other blood thinners. )
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Neurologists
APS and healthy lifestyle
need help
Stroke and APS
Searching for a cure for APS
