Ct scans

[Tim_Thorpe]

Under prof hunt at st Thomas hospital London

Have a strokes and mini strokes should I be having ct or MRI scans on regular bias i.e. Once a year ??

[Tim_Thorpe]

Had an operation to repair a hernia from a previous operation in sept

Afterward saw a register at st Thomas and told her I had been having funny turns since operation lucky she sent me for a ct scan it was only because of that scan that they discovered mircro clots on my brain which had happened since my last scan in 2013 ! So if the registra hadn't bothered to. Send me for I scan I wouldn't of been aware of the new brain damage.

Saw prof hunt last Tuesday she said I must of been suffering strokes in the past but lucky the didn't turn in to any major ones . She said my aps is so strong that warfrin is not working and is cranking up my aziophrine dose to 150 mg aday to hopefully stop me having more strokes 😑 I was put on aziophrine in June only because Richard graves my thrombosis nurse sneaked into my Constantation I had with prof hunt to say about me drinking wine on the weekend!!! I told I drink a bottle of wine on a Friday and Saturday and two pain killers because that way I get two good night sleeping with out and pain 😳That's when she started me on aziophrine but said I wouldn't need to be on more then 100mg daily ? Now I'm on 150 mg

I'm extremely lucky to be under there care of prof hunt and here team and 100% sure she's doing the best she can for me but some times it all gets a bit confusing and a bit too much some times to take in . Really fill that finding these new clots on my brain has been a big knick in the teeth for me just feel it one step forward and two steps back

[MaryF Administrator in reply to Tim_Thorpe]

I have professor Hunt as one of mine, she is excellent also looks after my daughter. I am sure if she feels you need more scanning she will order them. I hope you feel better soon Tim. MaryF

[Tim_Thorpe in reply to Tim_Thorpe]

Not sure if it was an MRI or cat scan I had

[Yllek in reply to Tim_Thorpe]

I really do understand how you're feeling. I've got a haematologist and rheumatologist who are both APS experts and everybody says there're wonderful. However they both missed the fact I had a spinal stroke and it was neurologist number 5 who put the final pieces together.

This has been a kick for me and I've now lost some faith in my other experts as well.

As far as the scanning, my neurologist has now ordered further tests on my spine but this wouldn't be done if I hadn't persevered.

I don't have any answers, just wanted you to know I feel the same and understand how you're feeling.

Kelly