Alrighty then, my "interview" is up on MS Central.

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

Alrighty then, my "interview" is up on MS Central.

Postby CureIous » Tue Sep 08, 2009 4:03 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:54 pm, edited 1 time in total.
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 Arcee » Tue Sep 08, 2009 4:31 pm

Mark, I just read it and think you struck just the right tone - - clear, logical, positive. Just super. And judging by the comments on her CCSVI posts, and as we have been saying here, once people hear about this, the interest is going to be impressive.

Stentee #15 :)
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby CureOrBust » Tue Sep 08, 2009 4:39 pm

I posted a smaller simple "hey, look at this" on "patients like me" web site, and basically got very little response. The threads on scams got more response. It appeared people were more interested in poo-poo-ing rubbish than talking about such a promising concept.
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Postby catfreak » Tue Sep 08, 2009 5:12 pm

Very good Mark!!!

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby CureIous » Tue Sep 08, 2009 5:15 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:54 pm, edited 1 time in total.
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 skydog » Tue Sep 08, 2009 5:49 pm

Good Job Mark, I will be passing this on to any interested party. Nice to here the positive in all this once in a while. Keep it up! Peace, Mark
Plant a BIG Garden Live in the Moment
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Postby CRHInv » Tue Sep 08, 2009 7:32 pm

Way to go Mark! I think you sound terrific, positive and honest.
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Postby CureIous » Tue Sep 08, 2009 8:29 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:55 pm, edited 1 time in total.
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 CRHInv » Tue Sep 08, 2009 9:14 pm

OMG I GOT CCSVI, WHY GOD WHY??


This honestly made me laugh out loud. Actually, I am still laughing.
Thanks!
Beth
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Postby CureIous » Tue Sep 08, 2009 9:33 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:53 pm, edited 1 time in total.
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 Loobie » Wed Sep 09, 2009 4:46 am

I just got done reading mine and yours. They aren't too bad! Having my recent weakness makes me wish I could 'caveat' some of my responses, but overall I think it was OK. However, our awesome pal Marie has put me in a better mindset looking at possible "Tysabri rebound" which I will try like hell to pin the way I've felt the last few days on!! But seriously, I did wake up today and feel better than the last week, so I'm still up and down, and I don't think I did a very good job of relating that in the interview, but I was not feeling that way at the time so much. Not much I'd change I guess and I enjoyed reading your story Mark! Hopefully, I've got her email address now 8O , I can follow up after some time and give a glowing report. I'm hopeful for next Tuesday. If I just get the look and nothing actually intervened I'll be disappointed, but Dr. Dake is going to respond to what he SEES, not how I'm feeling. I think I need to keep that in mind more. He's fixing a venous occlusion that HOPEFULLY helps my MS. If not, well then I'm at the very least draining off my blood better.
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Postby zap » Wed Sep 09, 2009 6:27 am

It'll be interesting to see what her "skeptical neuro" has to say on Thursday. I'm not expecting much though.
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Postby CureIous » Wed Sep 09, 2009 9:32 am

:)
Last edited by CureIous on Sat Oct 03, 2009 3:52 pm, edited 1 time in total.
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 zap » Fri Sep 11, 2009 6:33 am

Well, the skeptic was pretty mild, but he threw out some questions that for the most part we could answer I think:

1. If CCSVI is indeed the cause of MS, then why do many patients of MS have no evidence of CCSVI?

2. Are these venous obstructions the cause or the product of MS (meaning what came first the MS or the venous obstruction-kind of chicken and egg question)

3. If CCSVI is indeed the cause of MS in at least some patients, would opening these blocked vessels lead to improvement? Will the disease progression stop or will the venous blockages come back again.

4. Do these venous blockages lead to some kind of sterile inflammatory process which responds to the current line of MS drugs?

5. Is it possible that these venous obstructions are infact related to the side-effects of MS drugs on the venous walls?

6. Does every patient with MS need to be tested/ investigated for these venous obstructions (meaning should all MS patients undergo venography or extracranial color doppler examination?)


Anyone who cares to take a swing, head to the Comments section here:

http://www.healthcentral.com/multiple-s ... 69/chronic
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Postby CureIous » Fri Sep 11, 2009 10:05 am

:)
Last edited by CureIous on Sat Oct 03, 2009 3:50 pm, edited 1 time in total.
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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