This Is MS Multiple Sclerosis Community: Knowledge & Support

CharW,

Thanks for the link! Smart and observant of you to catch the change they made in the title of the article.

There are almost 80 comments, and one of them is from cheerleader (signed as Joan Beal), but for some reason, she didn't mention CCSVI Alliance (?).

My comment is awaiting moderation -- I hope they don't mind that I promoted TIMS.

Yes! Glad the word surgery was corrected. The president of the CCSVI Alliance has made contact with the reporter, HP. I chose to comment as a wife and caretake, and someone who has read the research-rather than an official board member. There will be more to come.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Cheer,

Thanks for filling me in. I loved reading your post.

I wonder if we have Sharon to thank for the change in the title. I'm looking forward to the official unveiling of the CCSVI Alliance website. The more sites that intelligently promote CCSVI, the better off we'll all be.

Great article. I am not a "true believer" but I looooooove reading about the pressure being put on the medical community to consider other approaches to the disease.

yup, I wonder what other illnesses are out there that just need someone to take a step back and look at it differently. The new imaging technologies of the 90s played right into the discovery of CCSVI.

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Thank you NYTimes, et. al.

Unproven treatment? if the veins are blocked...OPEN THEM,
despite MS diagnoses...and THEN keep researching...


It's like Cataract removal...people were 'blind' until it was 'discovered'
the lens could be surgically excised and replaced!
Technology caught up...as did IR techniques...for Ccsvi...

Again, regardless of MS, if the veins are compromised fix them!!!

There was one quote in the NYT CCSVI article that struck me particularly :

"Joyce Nelson, the president of the Multiple Sclerosis Society in the United States, said 'I wasn't aware of how thin the veneer was and how close to the surface the frustration was'"

So this person who is paid over $400,000 a year to head up the NMSS is so out of touch with people with MS that she wasn't aware of "how close to the surface the frustration was" ? Talk about an ivory tower ! We are given this diagnosis, and we are given very little explanation of what it is or why we have it except that it is autoimmune and our brains are being damaged. And we aren't frustrated !! We are frustrated because our symptoms are not manageable ! Ms Nelson should do as Dr Sclafani has done and get on this message board and do a little reading.

ozarkcanoer

I saw Ms. Nelson's quote as It's not us, it's them! finger-pointing. If she admitted that they were slow to the table in CCSVI, if she admitted that the diagnostic studies that were funded are woefully inadequate, if she apologized for a past mistake in not putting some of their extensive funding toward LDN research (which now has an explanation for why LDN worked, because of its angiogenesis effect, aka collateral vein building), if she took a lead in exploring CCSVI research rather than a lead in blocking it, then I would consider listening. But this! "Look at them, look at them, they're so angry," finger-pointing. No responsibility for the MSS's role in the rejection they are now getting from us, the former sheep.

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Good comment on the NY Times blog:

As a retired physician I am all for patient advocacy.

My wife cured/controlled her longstanding universal ulcerative colitis (for the last ten years) with the SCD diet that she found online. –To the amazement of her gastoenterologist and myself.

Physicians have to run a mill today to cover expenses, and have very little individual time to offer. It helps if the patient is knowledgible and succinct.

Regarding research — drug industry research is based on incomes – not outcomes.

The Australian pathologist who found the little germ causing ulcers was derided for years–before he won the major health awards, and his findings toppled an entire medical industry of gastrectomies and ulcer remedies.

This venous stenosis may not be the answer for MS, but it certainly is worth investigation at the fastest pace.

Reading these replies should be required nightly reading for neurologists. Believe me patients speak “softer” in the medical office.

Good luck to all of us. Roger
— Roger

Thank you for you input CharW and welcome.

Ozarkcanoer and Cece,
Here here

Drury