Sept 8, 2009 Bologna CCSVI conference- finalized notes

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

Postby Rokkit » Sun Sep 13, 2009 2:46 pm

cheerleader wrote:Dr. Dake is having a joint meeting with the neurology and vascular depts at Stanford this coming week.


I guess getting you in there with your notepad and pencil would be out of the question. :D

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Postby LR1234 » Sun Sep 13, 2009 3:02 pm

[I guess getting you in there with your notepad and pencil would be out of the question]

lol.....Is it out of the question? :wink:
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Postby CureOrBust » Sun Sep 13, 2009 3:14 pm

Christmass isnt that far away..

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Postby Terry » Sun Sep 13, 2009 5:50 pm

how can I as a men achieve the more favorable course of a pre-menopausal women?


A well-balanced diet contains sufficient iron to meet body requirements. About 10% of the normal 10 to 20 mg of dietary iron is absorbed each day, and this is sufficient to balance the 1 to 2 mg daily losses from desquamation of epithelia. Greater iron utilization via growth in childhood, greater iron loss with minor hemorrhages, menstruation in women, and greater need for iron in pregnancy will increase the efficiency of dietary iron absorbtion to 20%.


From this, men and women would be equal. Also looks like giving blood would cause more iron to be absorbed.
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Postby radeck » Sun Sep 13, 2009 9:26 pm

Terry wrote:
A well-balanced diet contains sufficient iron to meet body requirements. About 10% of the normal 10 to 20 mg of dietary iron is absorbed each day, and this is sufficient to balance the 1 to 2 mg daily losses from desquamation of epithelia. Greater iron utilization via growth in childhood, greater iron loss with minor hemorrhages, menstruation in women, and greater need for iron in pregnancy will increase the efficiency of dietary iron absorbtion to 20%.


From this, men and women would be equal. Also looks like giving blood would cause more iron to be absorbed.


I suppose if a women during and after menstruation, or any person during and after blood-donation, lowers iron-intake, even the bodies increase of absorption efficiency couldn't compensate for the lack. However it seems like we really don't know what will happen.

Heck, there's got to be some way to chelate/make ourselves anemic! ;-)
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Postby cheerleader » Mon Sep 14, 2009 8:49 am

Would love that pocket video camera, cure! Maybe next Christmas! Can't get up to Stanford this week, but I'm sure Dr. D will let us know how it goes.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby daniel » Mon Sep 14, 2009 12:44 pm

I know it's been said numerous times before, but I just want to echo in here and give many thanks to Joan for all her super helpful work in researching and getting the word out. A great deal many thanks
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Postby Sawdoggie » Mon Sep 14, 2009 2:47 pm

I just got my iron bloodwork back and I am ready to rust so to speak. My ferritin count is north of 500 which is higher than it was when I was diagnosed with hemochromatosis 10 years ago. The plot thickens. I get to start dumping two units a month ASAP for the foreseeable future to get my Fe stores down.
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Postby loobiesmom » Mon Sep 14, 2009 4:09 pm

Cheer, I think you are an amazing, tenacious, brilliant, and very caring woman! Reading about your trip has been fascinating. Thank you for all the time and energy you have given to learning about CCSVI and getting that info out to this incredible MS community. You have helped so many and given so much hope to those with MS, including my son. Thank you from the bottom of my heart.
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Postby Jamie » Mon Sep 14, 2009 5:31 pm

Alright who posted the big ass picture that messed up the formatting?

Cure?!
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Postby whyRwehere » Tue Sep 15, 2009 12:35 am

Sawdog,
That is very interesting...I can't wait to hear how it affects you.
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Postby CureOrBust » Tue Sep 15, 2009 12:45 am

there's just "more of the picture to love"
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Postby Rokkit » Tue Sep 15, 2009 6:36 am

CureOrBust wrote:there's just "more of the picture to love"


ROFL!
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HH and MS

Postby paulmur » Sat Oct 31, 2009 6:33 pm

I just sent Sawdoggie a personal but I thought I'd be in touch with all of you too. I was dx'd with ms about 1.5 years ago. About 8 months later I was dx'd with Hemachromotosis. Ferritin level of 1500. I thought it very suspicious that I just happened to get both at the same time. But neither my hematologist nor my MS doctor were interested in discussing it in more than passing.
I too am doing phlebotomies and my ferritin level is about 700 now. I experience passing ms symptoms the primary being fatigue and depression.

Man, I just think the Italians and Buffaloians are on to something great. javascript:emoticon(':P')

I've just sent out an e-mail to my ms doc asking if I could get a Doppler scan. I've also submitted a request to become part of the UB research.

This is the first time, and I know I'm a newbie but, this is the first time I really feel like someone can even see the puzzle. Most of the rest was just dealing with the periphery.

-Paulmur
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Postby happydance » Fri Feb 12, 2010 4:36 pm

I just wanted to bump this up for all those who have not seen it. I've always wondered about the fibrotic changes Dr. Guilio Gabbiani was talking about. Could congential for some mean a birth defect, but for others it has to do with fibrotic changes causing the stenosis. Could this be why the worse the stenosis the worse the MS?

Just rambling. Any thoughts.
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