Our very own Anna featured on CTV

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Our very own Anna featured on CTV

Postby CureIous » Fri Jul 23, 2010 12:51 am

Great interview. Don't worry, the MSS has informed us on the piece, that copious amounts of $ is going to go to research whether there is a connection or not, but until then, they categorically state that nothing is proven, and that the extremely high bar is apt to be scaled sometime around 2050, they hope.

Meanwhile, back at the mice ranch...
http://swo.ctv.ca/healthlifestyle.php?id=7812

Anna and her husband did a very wonderful job on this interview.

Good job Anna and Pete, you done us proud...

Mark.

Hopefully Anna can come and tell us all the cool stuff they DIDNT put in there...
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby annad » Fri Jul 23, 2010 6:54 am

I am thrilled they decided to do a segment on CCSVI on our local news, for sure. I also understand how they have just a minute or two to condense an hour and a half of interview time!

I remember going through the list of my improvements such as bladder urgency, balance, walking, leg stiffness, brain fog, fatigue and swallowing. I remember telling her that I've switched from a daily survival mode (some days I woke up thinking, I can't wait for bed time!) to a living mode and actually looking forward to participating in a day. Forty-seven countries that have acknowledge this as a congenital malformation, ridiculous that they won't touch us because of MS and all the wrongs with the MS Society's CCSVI studies were also mentioned etc., etc.

I feel confident, that today, I can also add headaches and TN have also improved if not disappeared and I can bend over and pick something up off the floor without feeling like I have to pass out and feel like I'm out of breath!

Angioplasty ROCKS!
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Postby BadCopy » Fri Jul 23, 2010 7:41 am

Knowing that you have had MS for over 20 years and you are seeing improvements gives me SOME hope. Glad to see you are doing so well and yes you were a good person to represent us on tv.

On a kind of sad note. I also have stopped donating and asking friends/family to walk/ride for MS. I know that there are others out there that will need the MSS resources but I just can't bring myself to fundraise for them anymore. If they changed their tune and started pushing treatment then I think some of us may start back up. But I think it may already be too late for them.
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Postby annad » Fri Jul 23, 2010 9:37 am

BadCopy,
My angle was not to bash the Society but I realize the reporter has to get all sides in. To have the lady from our local chapter say there is no connection just. . .. grrrrr! We're not going to move quickly on it with that attitude.

I did not expect to get this much out of the treatment but I'm certainly not taking it for granted. Recovery seems to be as individual as our MS. I can say one thing for sure. . . no drug has given me back or improved my symptoms like angioplasty has!

I still need my walking aids but less and I think that's a victory!
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