Ongoing investigations

[Greenmil3]

Just as an update to you all and a brief recap following my cognitive issues and memory loss Professor D’Cruz diagnosed cerebral APS based upon symptoms and positive Lupus blood results. Therefore on warfarin amongst other things. Follow up appointment with Professor D’Cruz explained symptoms getting worse. He brought my case up at the next case conference and haemo want me to up my INR to 3.5 without them realising I have been above 3.5 for the last 8 months or so since being seen by one of the house officers on the lupus clinic last year! Anyway seen neurology Dr Paul Holmes and he says not got all of the right tests results for cerebral APS but agrees some issues especially changes in my brain stem so he has ordered a PET scan and found out today a lumbar puncture to try to see what’s occurring in my brain ! So the mystery continues but it may be that I am a atypical (not the right word but I couldn’t think of the right word!) APS with no relatable issues and it’s all down to my brain And nerves causing all the feelings and pain. He did confirm no tumour and not MS so any guesses on what the jackpot will be???? You just get used to one thing and they then tell you oops it’s not that I always thought we had to fight hard for our APS diagnosis but once you got it you at least could glean an understanding of your issues.

Typically me really doing everything back to front get the hard diagnosis first then move onto something else!!!

[HollyHeski Administrator]

Well, love your attitude and you do seem to have the best docs investigating all your symptoms.

Hope you get some answers x

[Greenmil3 in reply to HollyHeski]

Thanks Holly yep have the top Haematologist from the recommended list as well

[lupus-support1 Administrator]

Wishing you well for the remaining investigations.

With good wishes,

Ros

[Fra22-57]

I have cerebral APS too. I asked to be seen at Guys and have seen Professor Cruz. He is amazing.I do have my local rheumatologist I see once a year in Lincolnshire but go to Guys once a year too.Never been told to have a lumber punch..ouch! Can I ask you if your head sort of blacks out for a second .its brief but a strange scary feeling

[Greenmil3 in reply to Fra22-57]

Fra I get all sorts of strange things going on not black out but do sort of just zone out

[GirlfromTennessee]

Sad but our disease is not kind

[MaryF Administrator]

Hi, I do hope they get to the bottom of everything for you, I hope they also look in more detail at your B12 levels and order some of the more detailed tests available, as if this is low it will add to things being much worse, on top of your ongoing condition. ncbi.nlm.nih.gov/pmc/articl... Best to rule it in or out. Great that you are so upbeat! MaryF