A brief further update.

[Greenmil3]

After lots of tests and poking and Professor D’Cruz, Paul Holmes and Professor Beverley Hunt putting their head together they originally thought although APS positive that it may have been a more neurological issue. So off to neuro for MRI’s with radioactive stuff and a lovely lumbar puncture to discover not a degenerative disease so had a lovely call from Professor D’Cruz saying they were reverting the diagnosis to Cerebral APS and was being transferred to Professor Hunt’s care so guess the mental decline will just have to be managed!

[lupus-support1 Administrator]

This sounds as if this is “good” news but how are you feeling? It must be quite overwhelming?

With good wishes,

Ros

[Greenmil3 in reply to lupus-support1]

Ros it’s nice to find out it’s not something more drastic as if Cerebral APS isn’t bad enough but still leaves plenty of challenges ahead

[lupus-support1 Administrator in reply to Greenmil3]

Absolutely so please feel free to talk as and when you need it.

Be well!

Ros

[HollyHeski Administrator in reply to Greenmil3]

Hi, I'm triple positive and have cerebral APS, yes good news having this diagnosis and yes manageable.

Still frightened after a few years of diagnosis of future but learning to just adapt!!

Learning to live each day as a positive and to the full.

For me, I have good quality of life and Prof Hunt there if I need her.

Its not all doom & gloom, just a new way of life.

[Greenmil3 in reply to HollyHeski]

Holly I know and I am pleased and can cope most of the time looking forward to meeting prof Hunt as soon as I can.

You have always been there to support me and for that I thank you

[HollyHeski Administrator in reply to Greenmil3]

Great, that's why we are here, to share our own experiences.

[Fra22-57]

I have cerebral APS too.It does mirror MS so that was ruled out but I just have to live a different way of life than I would of chosen.Without my husbands help I would be helpless thou. I used to see Professor Cruz yearly but have now been discharged back to my own local rheumatologist.

[MaryF Administrator]

I hope you will get full support with the issues, Prof Hunt is great by the way. She is very detailed and careful in my own experience. MaryF

[GinaD]

Before I was treated with warfarin an MRI showed that I had dozens -- DOZENS! of white matter leisions in my brain. That MRI photo was scary! A year after started warfain, a follow up MRI showed that all the leisons were gone except one -- in the visual cortex which is why I can not wear bifocals -- my accurate visual processing area is too small to analyze info from only half my visual field. So, don't despair. The brain can repair itself if you eat right and exercise both your body and your brain. Getting a diagnosis and starting treatment means most of your battle is now won!

[Greenmil3 in reply to GinaD]

Gina glad yours repaired I have been on Warfarin for last 3 years and nothing has repaired and it is continuing to worsen hence the neurology investigation to see if it was something else!