Cerebral APS

[Greenmil3]

Hi all

I just want to do a quick poll of how many have a diagnosis of Cerebral APS?

I know most of us suffer some form of brain issues and I know that sucks but sorry I can’t include you.

I only ask as I want to find others with this to be able to chat with you.

Thanks

Paul

[HollyHeski Administrator]

Hi, I'm triple positive cerebral APS, this diagnoses was given when first diagnosed.

[Greenmil3 in reply to HollyHeski]

Thanks Holly you probably have told me before but just forgotten

[Ageingfemale]

On letters from hospital it always says cerebral APS.

[daisyd]

Yes I have on Warfarin range 3-4 also take besides that hydroxychlorquine ? Spelling which has helped with my clumsiness and not falling

I also take pills for epilepsy I think caused by this too

[GinaD]

I was diagnosed in 2001 after, what MRIs showed, were multiple mini strokes with damage. I have never heard the term "cerebral APS" before, but that perhaps describes my primary symptom.

[Nesting]

I had a mri scan for left sided tinnitus. Scan showed tiny cerebral infarcts in brain . Then after two blood test 12 weeks apart results showed lupus anticoagulant. Then I got diagnosed with APS

[Tucson]

My recent letters have always included the term "Cerebral Aps" personally it makes little sense to me. It's a blood condition and as such affects every part of me. I have had 3 strokes and a massive internal bleed in my pelvis due to my Warfarin being adjusted and other things added which didn't work. My main symptom is the disintegration of my joints, virtually all joints are affected with the exception of ankles and spine at the moment. Since switching to clexane 2 years ago I've had no further strokes.

[Stella]

Yes, I have cerebral APS diagnosed 18 years ago. Massive problems with hand/eye coordination. Cannot drive or even tie shoelaces for example. Hands do not work properly and I get lost very easily. Anticoagulated for last 13 years. I am on Acenocoumarol and hydroxychloroquine among others, but damage already done.

[Fra22-57]

Yes I have.been diagnosed in 2015

[KellyInTexas Administrator]

I have been told I have systemic APS that involves multiple organ systems, one of which is the brain.

[Elfie1]

Hi I had a spect. scan because of severe headaches and migraines so it was found on there. No more problems since Tinzaparine injections.

[Emmaj3]

me x