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

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Postby chrishasms » Tue Nov 24, 2009 10:14 am

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Last edited by chrishasms on Sat Dec 05, 2009 1:35 pm, edited 1 time in total.
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Postby ozarkcanoer » Tue Nov 24, 2009 11:36 am

chrishasms.... money makes the world go round !!!! :D :D
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Postby Miss_Feisty » Tue Nov 24, 2009 1:19 pm

I just read the article...it was straight to the important points.

I'm sick of hearing "from the position of the society, from the position of the neurologists"........WHAT ABOUT OUR POSITION OF CHRONIC PAIN & POOR QUALITY OF LIFE????

OF COURSE THERE WILL BE A STRONG SUPPORT OF CCSVI TREATMENT FROM OUR POSITION OF SUFFERING. (yes I am yelling).

Ok I'm calm now. :D
If there are 50,000 to 75,000 ms sufferers in Canada alone, that is a strong voice if CCSVI treatment research is demanded here. I'm also certain we all contribute financially to the cause and have brought awareness to friends and family who have also donated. I wonder what the ratio is between fundraising/donations to drug sponsorship/commissions?

The issue of the pharmaceutical involvement is a double edged sword. Some medication does work, some money has contributed to an awareness, yes the companies make a profit, but money has been allotted to many good things for our benefit. We also know when money is involved, there is competition.

The response of the society is a responsible one. It is the lack of enthusiasm for an amazing new FACT that disappoints me. It may or may not be a cause or fix, but stenosis in ms is still a new valid discovery.

The society is correct, people should not abandon treatment until more is known. From reading our dear folks who have received the CCSVI treatiment, it appears some symptoms have disappeared and some have reduced. This means, yes some of us will still need some drugs even with the treatment. In the long run wouldn't that make everyone happy?


Sorry for the ranting, I'm still learning and very hopeful. I think CCSVI treatment could have strong financial support independently as more people learn of the procedure. But it is good to hear the society is accepting proposals, as they should be.
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Postby ozarkcanoer » Tue Nov 24, 2009 1:23 pm

Miss_Feisty... good rant !! :D
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Postby Miss_Feisty » Tue Nov 24, 2009 1:38 pm

Last year, my wonderful son raised $500 on his own accord for the MS walk. That is a lot of money for one kid and one cause.

The math:
50,000 fund raising people x $500 = $25,000,000.00

It's a nice number and a possibility. Even with this economy we can put our money where our hearts are.

Just my two cents once again. :)
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Postby bestadmom » Tue Nov 24, 2009 4:17 pm

Miss Feisty,

I love your name. It is fitting and yell away. I'm with you 1000%. If the MS societies don't get on board with this, there will be new organizations for CCSVI. It's something I've predicted on this board for a while now.

Michelle
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Postby Miss_Feisty » Thu Nov 26, 2009 11:12 am

Bestadmom: I completely agree with you about the CCSVI organizations!

MS is like theatre....the doctors are the stage directors, the drug companies provide the platform, the ms societies handle the public relations. The people in our life represent the audience and we are, not only the stars of the show, but we are the business.

We all deserve the best. We deserve to be listened to and have every opportunity to feel well. For such a varied group of people who lack control over our own bodies at times, we have an extreme amount of control as a group, working together to encourage wellness ( I love you T.I.M.S community).

Sorry, off CCSVI topic once again....(must curb enthusiasm ;))

I think the incredible feedback of the Liberation Treatment is proving the point. We are interested, this does have merit, and where do we go from here. The doctors will get on board eventually. The pioneering spirits and outside of the box thinkers will be first and the ones who have invested 1000's of hours of research on other methods will be last.

Time is key. It is our nature to be impatient and want suffering to end. It is the researcher's nature to analyze to the earth's end! We will all meet in the middle at some point.
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Postby robbie » Thu Nov 26, 2009 12:11 pm

Dr. Zamboni reports that in the 18 months following surgery, 50 per cent of those MS patients had no attacks

5 out of 10 people had attacks after the surgery. I seem to have 90 or so % stuck in my head but that was just the amount of ms folks with stenosis.
Had ms for over 19 years now.
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