Has anyone decided to "reschedule"?

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

Postby Cece » Sat May 08, 2010 10:50 pm

Lyon wrote:
Cece wrote:Good point...if his patient population is young black males, their risk factors are lower than if they were white or female, but yeah, some small fraction of a percentage of the cases he's treated would be people with MS.
8O If it's really THAT painful to concede that something you desperately hope to be true, might not be, we don't need to continue.......

hey I'm bad with numbers, maybe you could crunch the math...out of 3000 young African American male patients, how many do you say had MS? You'd have to find the prevalence of MS in that population. And yes it is after midnight...and while you can say/think whatever you like, the characterization of me as someone desperately hoping is not accurate.
"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
Cece
Family Elder
 
Posts: 9018
Joined: Mon Jan 04, 2010 4:00 pm

Advertisement

Postby Lyon » Sun May 09, 2010 12:28 am

.
Last edited by Lyon on Mon Nov 21, 2011 4:38 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby Cece » Sun May 09, 2010 10:32 am

Lyon wrote:From what I read a minute ago a 1 in 700 total US incidence so I'd guess that 1 out of 1400 of Dr Sclafani's patients had MS is more than fair.

all right...when I have time I'll dig back through his thread and see if the 3000 figure is accurately remembered...but we're looking at maybe 2 in 2800 or double that to 4...you make a good point, so I was trying to agree but then argue that these numbers are very, very small.

Still if you go your whole career and essentially never see this, then find that everyone from a specific subhort has it, that would catch your attention, as we seem to have caught his attention. :)

That is what I meant by parade of tortuosities, lol. I'll substitute zebras but it's not that significant of a point: in a whole career, maybe 2-4 zebras slip past among the other horses, not enough zebras to make any sort of note, and then comes this subgroup and every single one of them is a zebra, and you can predict that the next one will be a zebra and it is, and so on.
[/quote] and I shouldn't have made that assumption.[/quote]
This was nice to hear, thanks.
"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
Cece
Family Elder
 
Posts: 9018
Joined: Mon Jan 04, 2010 4:00 pm

Postby Lyon » Sun May 09, 2010 1:05 pm

.
Last edited by Lyon on Mon Nov 21, 2011 4:36 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby Zeureka » Sun May 09, 2010 4:37 pm

scorpion wrote:Bob why do you say that it seems certain that everyone with ms has ccsvi. That is not what the results of the Buffalo study seemed to show. A correlation yes but 100% correaltion no.
Hmmm. there is just more news about that...have a look on the new TIMS threads..

And I have even now stopped checking more news - it will not change anything except confirming more of the existing findings...that CCSVI and MS are linked IS A SCIENTIFIC FACT !

And not only link CCSVI -MS, but also related to some improvements - there are certainly some - and these are not miracles but improving quality of life on certain symptoms and will depend in strength and type from person to person (depending on type of MS + venous insufficiency...and whether more recent or longer myelin damages - but improved brain oxygenation when opening a jugular is logical anyway...)

Think one good example on type of improvements (and also summary of % links found CCSVI-MS) are the Kuwait research initial samples, which can be found here:

http://www.ccsvikuwait.com/Details.aspx?d=4
(but these do in no way stand alone - also Simka, Zamboni and others reported similar improvements - and MRI checks are/have also been done in some trials to check differences. In general it has been observed from different doctors that have performed percutaneous venoplasty on MS patients that had CCSVI diagnosed via doppler and/or MRV+veno/angiography, that the less disabled and long-term damages, the more chance for improvement. And restenosis was in many cases linked to recurrence of symptoms).

For me already convincing on all what has until NOW been published from research in Kuwait, Poland, Italy, States ecc...so far. And all the multiple testimonials that have heard from all these different places in the world from patients in videos, written texts, e-mails, articles, TIMS, facebook testimonial pages in Italian, English and other languages/discussions and life on the phone by talking to people etc...even patients in Italy from several years ago taking part in Zambonis first trials, who at the time did not even understand what CCSVI was precisely and should do to them...

AND even more importantly: some doctors/professors that undertake CCSVI research and/or took part in the trials recently and saw the improvements with their own eyes - they say they have been overvwhelmed stimes...

=> all this for me personally is already convincing enough! And the placebo effect argument starts to get a really ridiculous issue...sorry...it is just a nice way to attack/defend the other position, and just shows that all the scientific and observational proof that already EXISTS is neglected!! And the political/economic reasons for this turn me really off...we are worth 8 billion US$ on the world market to a certain sector...and there is much speculation to "drive the market upwards" on basis of a "rising disease prevalence/expanding patients population/widening healthcare provision for MS" forecast from 2010-2025!
Well, they also mention technological advances, but CCSVI is still neglected in that forecast I guess ;-)
User avatar
Zeureka
Family Elder
 
Posts: 481
Joined: Thu Jan 14, 2010 4:00 pm
Location: Italy

Postby shye » Sun May 09, 2010 6:26 pm

I think it is still early days to be making some of the concrete prognostications being made here--we are not getting reports from MANY liberated MSers, for whatever reason. Do their initial good results continue? for how long?? do they regress? In what ways? How many times have they (or will they) need the procecure re-done, or now need stents? How many times can you repeat this procedure and remain healthy?
Sure, we see some spectacular results, but slowly some of the less spectacular and some of the failures are coming to light. And it is too early I think to tell if the spectacular will be maintained. We need to get more people to post their results (and to do timely updates), and to get someone good at finding all the posts elsewhere and posting or linking them here on Thisisms.
User avatar
shye
Family Elder
 
Posts: 758
Joined: Sun Nov 29, 2009 4:00 pm
Location: NYC

Postby Lyon » Sun May 09, 2010 6:41 pm

.
Last edited by Lyon on Mon Nov 21, 2011 4:34 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby Lyon » Sun May 09, 2010 6:55 pm

.
Last edited by Lyon on Mon Nov 21, 2011 4:34 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby Liber8 » Sun May 09, 2010 6:59 pm

Hmmmm....could have swore this topic was about those that have or are thinking of rescheduling.
User avatar
Liber8
Family Member
 
Posts: 57
Joined: Sun Feb 28, 2010 4:00 pm
Location: 10,000 Lakes

Postby goldamier » Sun May 09, 2010 7:18 pm

Can I get somebody's place if you are canceling or rescheduling? Please let me know.
THX
User avatar
goldamier
Getting to Know You...
 
Posts: 11
Joined: Thu May 06, 2010 3:00 pm

Postby Lyon » Sun May 09, 2010 7:20 pm

.
Last edited by Lyon on Mon Nov 21, 2011 4:34 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby Brynn » Sun May 09, 2010 7:22 pm

Johnson, thumbs up for your optomistic posts! I totally support your positive attitude and get so tired of these folks that take so much energy trying to slap down the possibility of improvement. For me, there is a life time to feel sorry for myself IF I should find that my symptoms DO NOT go dramaticaly away again next week after my second stent. Nothing in life is ever a sure thing, but things rarely go well when you don't hope and work for the best. I don't think her appointment in December should be rescheduled...that is still over six months away! They have no problem filling spots at the last minute, so just stay positive and put your thinking cap on for some ideas to raise t he funds! Good luck, and Johnson, I will be really excited to hear about your trip next month! Take care, Brynn
41 years old, dx 1998, current EDSS 6.5
User avatar
Brynn
Family Elder
 
Posts: 116
Joined: Sat Nov 28, 2009 4:00 pm
Location: Spokane, Wa

Postby 81Charger » Mon May 10, 2010 8:41 am

I think that if you have "MS", you can be pretty darned certain that you have CCSVI.

To do a cost/benefit analysis - I paid $2350 for Doppler and MRV at False Creek. I was 90% certain that I had CCSVI, and did not need the scans to decide to go to Poland. I only did them at FC because it led to a referral with the IR that got shut down in Victoria before he could "do me". I figured that the $2350 would be worth it if it saved me $15,000, or whatever, to go to Poland. The $2350 would have paid for cattle class airfare and 5 nights at the Qubus, or airfare and the Doppler.

Unless you think that you can get treatment here in Canada with your results (highly unlikely at this point in time), I would advise putting the money to a flight to Poland.

I do feel though, that we will see treatments being done openly here by Christmas. They will probably be announcing it as I am wheeled into the theatre in Katowice, with my good luck. Grin The Internet has changed the face of the game, and our numbers are huge. This is being discussed in both chambers of Parliament, it fills the airwaves and newspapers - front page. The ramparts are crumbling under our hammering.

I am sorry for the people who are limited by lack of finances. Get inventive. Fill out some applications for credit cards (LIE!) and max them out. Then declare bankruptcy. It's not like most of us have anything to lose. Plus, you will feel better, and maybe even be able to work again! Then you can pay them back. Have a raffle where you sell future services - like house painting, piano lessons, tutoring math, whatever. People pay up front, and get something back later, when you are feeling better. IPOs for Liberators LLC. People should be investing in people, in my humble opinion.


I know most people that have MS do have CCSVI. But I look & feel normal, other than freezing fingers, toes & all over actually. I don't have any other issues. Si I just want to be sure that's what's wrong before I go.
81Charger
Family Member
 
Posts: 47
Joined: Tue Nov 24, 2009 4:00 pm
Location: New Brunswick, Canada

Previous

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service