Search found 14 matches

by JSTCD
Fri Feb 10, 2012 4:58 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Face oedema ??
Replies: 17
Views: 2973

Re: Face oedema ??

I actually did a "study" on this, right here. http://www.thisisms.com/forum/chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic8839.html this was back when I fist heard about CCSVI, there was only Dr Zamboni's work, and who knew, maybe he's wrong or biased, or a crook. There were no other rel...
by JSTCD
Fri Feb 10, 2012 4:14 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Nature of Things
Replies: 50
Views: 5254

Re: Nature of Things

It was fun to watch, Bumbling medical profesionals poo-pooing anecdotal evidence while real patients get better in front of your eyes. Makes you mad though, not sure when anecdotal evidence, "the lowest form of evidence" (plus all the meta studies they have now) gets to be enough to change these peo...
by JSTCD
Mon Jan 09, 2012 11:26 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Chronic Cerebrospinal Venous Insufficiency (CCSVI)-
Replies: 1009
Views: 288958

Re: Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

So now that we're three years out, were are we? When I first joined, CCSVI seemed too good to be true, and I was waiting to see if time would clobber it. But seems to have stood the test of time. On the other hand, doesn't seem to be proven yet either. So where are we? Is this "cold fusion" or "simp...
by JSTCD
Fri Mar 19, 2010 6:40 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Total Number Liberated
Replies: 15
Views: 3407

That's a lot of people that hav had the procedure. Is there any word on how many post procedure relapses? It would be really cool to get some sort of average person-months between relapses for those who have had this done. In reading through this site, anectodally, there seams to be a LOT of non-rel...
by JSTCD
Fri Mar 19, 2010 6:26 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI and BBB
Replies: 48
Views: 6320

My limited understanding is: 1) CCSVI causes irregualrities in blood flow. 2) irregularity in blood flow cause reflux. 3) reflux means that some percentage of blood is not going allong the perscribed path, heart,lung,kidney,liver,brain etc. and instead is recirculating in the brain withough oxigen r...
by JSTCD
Mon Mar 08, 2010 7:26 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Ok were all upset and angry, so now what?
Replies: 13
Views: 3127

Stating that CCSVI causes MS really hinders our campaign as there is NO proof. It is correct to say that MS and CCSVI have a correlation, which is being tested in a large Buffalo NY study. I dissagree. If you walk in to an emergency room with a knife in your arm no-one is going to do a double blind...
by JSTCD
Wed Dec 23, 2009 11:21 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Ok were all upset and angry, so now what?
Replies: 13
Views: 3127

What to do.

This is what I did, and want to do: I heard about this, and wanted to confirm it, I searched the internet, there was no second study to confirm deny. But it did seam like a sensible theory to me. I had casually noticed my wife's head turns very red when she exercises (the one with MS). Suddenly this...
by JSTCD
Wed Nov 25, 2009 1:22 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Has Anyone Asked, And Been Told No? (Canada)
Replies: 25
Views: 5010

I got a private message from another guy who said his doc said NO. (I'll keep all other details private) This irks me. (well more than irks me) In terms of cost to the system, the scans are WAY chearper than the drugs, let alone the cost to scociety of all the debilitation that MS causes. In term of...
by JSTCD
Wed Nov 25, 2009 12:49 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Visible effects of CCSVI, simple at home test
Replies: 34
Views: 11227

Thanks to Nancy Lebovitz

Thanks Nancy for posting this on your other site. We got some great data from people without MS. Combined poll so far: MS YES : 34 ( 79% of MS total ) MS No : 9 NoMS Yes : 6 NoMS NO : 26 ( 77% of Non MS total ) 77% did NOT have red-head compared with 79% with MS who do. While the 23% non MS -red hea...
by JSTCD
Wed Nov 25, 2009 6:23 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Has Anyone Asked, And Been Told No? (Canada)
Replies: 25
Views: 5010

By all reports Dr Haacke is swamped, and it looks like he was only looking for 10 people from each center. Even then this is the "join a study" route. which is fine, but no substitute for the "get my GP to refer me for tests" route. I'm very interested in knowing if you can get refered to be tested,...
by JSTCD
Tue Nov 24, 2009 1:21 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Has Anyone Asked, And Been Told No? (Canada)
Replies: 25
Views: 5010

Has Anyone Asked, And Been Told No? (Canada)

Has anyone in Canada asked thier GP or Neurologist for a referal to have thier veins checked and been told "NO"?

If "No" what arguements are they using?

I'm only interested in "can i get the diagnostic procedures" at this time, as "can I have it done" is a whole other ball of wax.
by JSTCD
Mon Nov 23, 2009 11:49 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Visible effects of CCSVI, simple at home test
Replies: 34
Views: 11227

Update

Thanks so much everyone for your feed back so far. I hope people will continue. Certainly I have no problem what-so-ever with people referencing or posting links to this study etc.. The more people we can get to take this survey, the more certain we will be of the results. We are certainly short of ...
by JSTCD
Sun Nov 22, 2009 9:35 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Geographic distribution, MS and CCSVI
Replies: 43
Views: 8070

I don't think vein formation is entirly genetic. It also has something do do with how you develop. I would think that in a HOT climate, you would need to increase blood flow to the brain to cool it, and a child developing in that environment might develop wider veins. In a cold Climate the opposite ...
by JSTCD
Sun Nov 22, 2009 6:44 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Visible effects of CCSVI, simple at home test
Replies: 34
Views: 11227

Visible effects of CCSVI, simple at home test

I'd like to get a better idea if this CCSVI thing is real or not, but faster than years from now. I have a simple do it at home test that should show if CCSVI is real or not. I hope you can help me. Basically, having impaired flow out of the head won't only show up as MS, it should also have visible...