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Posted: Thu Jul 16, 2009 7:02 am
by peekaboo
Here's to Friday! Can't wait to find out what your Doc says about misreading your scans. This is very promising for the UK and the folks over there.
Posted: Thu Jul 16, 2009 5:15 pm
by patientx
peekaboo wrote:Here's to Friday! Can't wait to find out what your Doc says about misreading your scans. This is very promising for the UK and the folks over there.
Who says the scans were misread?
Posted: Fri Jul 17, 2009 11:51 am
by LR1234
........
Posted: Fri Jul 17, 2009 3:24 pm
by patientx
That sounds like a pretty reasonable approach.
Posted: Sat Jul 18, 2009 12:23 am
by LR1234
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Posted: Sun Jul 19, 2009 4:45 am
by gibbledygook
Well done L!
What a slog this is. I'm still waiting for Dake's recommendation at ST Thomas'. I'm seeing another doctor tomorrow with the scans but they are in radiology not neuro-cardio-thoracic-vascular...but it is university college london so maybe something will happen.
Posted: Sun Jul 19, 2009 5:13 am
by LR1234
Good luck with that Gibb! Hopefully you can get them motivated to start their own investigations in to the theory!
Posted: Sun Jul 19, 2009 5:50 am
by peekaboo
Gibbs & LR You two are doing a great job over there! Somethings going to give
Posted: Tue Jul 21, 2009 12:00 pm
by gibbledygook
Right well University college London hospital now has my scans on the Pax system which means that any doctor who is interested can have a look if they search on my name, Alexandra Gibbs.
I'm still trying to get a name from Dake for the contact at St Thomas' but I guess he's pretty busy with balloons and stents right now!
Posted: Tue Jul 21, 2009 12:41 pm
by LR1234
Well done Alex!! We now need to make more of the neurologists and vascular dr's who can access the system aware of your scans.
I have my dopplers Thursday so I will keep you posted on that.
Anyone have an idea what a duplex doppler is? Apparantly I am having one of those.
Posted: Wed Jul 22, 2009 7:23 am
by LR1234
..........
Posted: Wed Jul 22, 2009 7:31 am
by peekaboo
Do you have any examples of CCSVI dopplers? there were some on Zamboni papers. That might help the guy/gal doing them..
Regardless...fingers, toes, eyes you name their crossed for you and fir results that mean something
Posted: Wed Jul 22, 2009 11:23 am
by gibbledygook
good luck L! I had shocking pain in my left cheekbone after the stent was put in so I think many of the veins in my face may have been trying to take the load...
Posted: Wed Jul 22, 2009 2:57 pm
by whyRwehere
If they say there is nothing wrong, don't dismay...they may just see it as being nothing wrong. Ask them to be very honest to you about what they DO see.
Posted: Wed Jul 22, 2009 3:40 pm
by Jamie
Agreed, they are hard to read.
However it would be ace if local places could start to follow a standardised check that cut out all the travel for everyone.
Hope it comes up positive.