Feeling Really positive

[pinkyandperky]

Hi all, I had my appointment under Professor Hunt yesterday, I was really impressed with how lovely and helpful the whole team there were. They are reviewing me in 6 weeks. I feel much less anxious now.

[Apspain]

I did too few weeks back...at first was with someone else and they wanted to take me off warfarin and I threatened to sue if anything happened to me and would she be happy to take responsibility. I got moved quickly in to my doctors office for a dialogue...I have since had a pet scan and am officially vindicated!!! Thanks to my the main consultant.

[Bobbydoodle in reply to Apspain]

Do you mind what the pet scan was for and what it found? I’m newly diagnosed with Lupus SLE and also have APS I’m on warfarin but I haven’t had many tests like scans etc and I’m due to see my lupus specialist next week for the first time so making a list of what to ask him.

[Apspain in reply to Bobbydoodle]

Ahh ok. I think newly diagnosed patients are ok but those that had been diagnosed under the old criteria were at risk of having there diagnosis and medication removed exposing them to health risks thus the need for them to have a pet scan which showed hypoperfusion a typical lack of blood flow and or micro clotting that shows in Antiphospholipid patients that cannot be seen in MRI or ct scans and where a person may also have negative pathology but still have the proof of Aps on a PET scan which meant they absolutely needed more than just the standard treatment I believe but they work form.one person to another. I hope that all makes sense.

[KellyInTexas Administrator in reply to Apspain]

Neurology : Note FDG Dimentia protocol for dementia PET scans on brain show hypo profusion in brain with APS patients - at a very high percentage. Numbers not yet released.

[KellyInTexas Administrator in reply to Bobbydoodle]

Great question.

[HollyHeski Administrator]

So pleased, all we want is to be understood and listened to xx

[Ozchick in reply to HollyHeski]

Makes a huge difference when you are taken seriously and listened to!

[Bobbydoodle]

That’s great to hear

[MaryF Administrator]

She is a good doctor and has a great team, I am very grateful to attend that facility with my family. MaryF