This Is MS Multiple Sclerosis Knowledge & Support Community

Posted: **Tue Sep 08, 2009 3:31 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

Posted: **Tue Sep 08, 2009 3:39 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.

Posted: **Tue Sep 08, 2009 4:12 pm**

Very good Mark!!!

Cat

Posted: **Tue Sep 08, 2009 4:15 pm**

Posted: **Tue Sep 08, 2009 4:49 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

Posted: **Tue Sep 08, 2009 6:32 pm**

Way to go Mark! I think you sound terrific, positive and honest.

Posted: **Tue Sep 08, 2009 7:29 pm**

Posted: **Tue Sep 08, 2009 8:14 pm**

OMG I GOT CCSVI, WHY GOD WHY??

This honestly made me laugh out loud. Actually, I am still laughing.
Thanks!
Beth

Posted: **Tue Sep 08, 2009 8:33 pm**

Posted: **Wed Sep 09, 2009 3:46 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

, 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.

Posted: **Wed Sep 09, 2009 5:27 am**

It'll be interesting to see what her "skeptical neuro" has to say on Thursday. I'm not expecting much though.

Posted: **Wed Sep 09, 2009 8:32 am**

Posted: **Fri Sep 11, 2009 5:33 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

Posted: **Fri Sep 11, 2009 9:05 am**

This Is MS Multiple Sclerosis Knowledge & Support Community

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

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