Skepticism or ignorance?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
User avatar
mose
Family Member
Posts: 45
Joined: Wed Aug 19, 2009 2:00 pm
Contact:

Post by mose »

chrishasms wrote:It can't be a crock - Considering ONLY MS patients, and all of them tested so far, have presented a stenosis. I am beginning to think an MS-er w/o a stenosis would be like finding a Brazilian in a swimsuit in the middle of a crowd of 50,000 Eskimos in a field outside of Yellowknife in January.
Though I find the mental image funny, I must respectfully disagree with you sentiment. I think that CCSVI, if proven as a cause(with causes of the stenosis itself to be researched in the future), will finally help end the trash bin diagnosis that is MS. As Lyon often states, MS is not diagnosed with anywhere near 100% accuracy. There are plenty of individuals out there with diagnosed MS that actually have other disorders, and others who likely have lesion formation and consistent symptoms with completely separate etiologies, so you will invariably find 'MSers' without stenosis of any kind.

If all the high hopes for CCSVI pan out, it will 'claim' a certain percentage of MS patients. But there will still be a distinct percentage that still are of unknown origin(linfection, chemical exposure, etc.) We will end up with at least a few new 'tags', perhaps with the term multiple sclerosis referring ony to the stenosis-based disorder.
User avatar
Sharon
Family Elder
Posts: 1285
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado
Contact:

Post by Sharon »

so you will invariably find 'MSers' without stenosis of any kind.
Marie's friend is a clinically diagnosed MS'er without stenosis....Dr. D. could not find any blockages. Was she mis-diagnosed?
Island Girl wrote:
He said I was different, that on a bell curve I was not like the usual MS patient.
I think there will be MS'rs found without stenosis...do they have a different disease?....there is so much to be researched.

Sharon
Lyon
Family Elder
Posts: 6071
Joined: Wed May 03, 2006 2:00 pm
Contact:

Post by Lyon »

..
Last edited by Lyon on Fri Jul 29, 2011 12:13 pm, edited 1 time in total.
User avatar
CureIous
Family Elder
Posts: 1262
Joined: Tue Jul 14, 2009 2:00 pm
Location: Riverside, CA
Contact:

Post by CureIous »

:)
Last edited by CureIous on Sat Oct 03, 2009 2:22 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
Lyon
Family Elder
Posts: 6071
Joined: Wed May 03, 2006 2:00 pm
Contact:

Post by Lyon »

..
Last edited by Lyon on Fri Jul 29, 2011 12:14 pm, edited 1 time in total.
User avatar
CureIous
Family Elder
Posts: 1262
Joined: Tue Jul 14, 2009 2:00 pm
Location: Riverside, CA
Contact:

Post by CureIous »

:)
Last edited by CureIous on Sat Oct 03, 2009 2:21 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
User avatar
CureOrBust
Family Elder
Posts: 3374
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Post by CureOrBust »

Sharon wrote:
so you will invariably find 'MSers' without stenosis of any kind.
Marie's friend is a clinically diagnosed MS'er without stenosis....Dr. D. could not find any blockages. Was she mis-diagnosed?
Island Girl wrote:
He said I was different, that on a bell curve I was not like the usual MS patient.
The flaw in this example is I think, that the "100% concordance" that people refer to, is SPECIFICALLY the doppler tests that Dr Zamboni performs. Dr Dake's examinations are very different, and no-one has claimed 100% for those.
Sharon wrote:I think there will be MS'rs found without stenosis...do they have a different disease?
Assuming CCSVI is MS. :?
User avatar
Sharon
Family Elder
Posts: 1285
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado
Contact:

Post by Sharon »

Cure wrote
The flaw in this example is I think, that the "100% concordance" that people refer to, is SPECIFICALLY the doppler tests that Dr Zamboni performs. Dr Dake's examinations are very different, and no-one has claimed 100% for those.
Cure this is true---no one has claimed 100%. As I said in my post ,Dr. D has had one person without stenosis - Island Girl. As of August 5th when I was at Stanford for my follow-up, IG was the only person he had tested without stenosis. Dr. D has treated other people than those that post here on TIMS--. If you just take those here on TIMS, you have over 90% with stenosis. I may be stepping out on a limb here---is there anything else in MS research that correlates that high %---i.e. virus, location, vitamin D, etc.?
Rokkit
Family Elder
Posts: 669
Joined: Tue May 19, 2009 2:00 pm

Post by Rokkit »

Sharon wrote:is there anything else in MS research that correlates that high %---i.e. virus, location, vitamin D, etc.?
EBV is 100%, but since the general adult population is 95%, I don't think it's very helpful.

Rokkit
chrishasms
Family Elder
Posts: 1161
Joined: Thu Sep 14, 2006 2:00 pm
Contact:

Post by chrishasms »

123
Last edited by chrishasms on Sat Dec 05, 2009 5:35 pm, edited 1 time in total.
User avatar
Sharon
Family Elder
Posts: 1285
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado
Contact:

Post by Sharon »

EBV is 100%, but since the general adult population is 95%, I don't think it's very helpful.
EXACTLY!!
Post Reply

Return to “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”