That's what I'm talking about- CALL THEM OUT!!! WTG!!!

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

That's what I'm talking about- CALL THEM OUT!!! WTG!!!

Postby BooBear » Thu May 20, 2010 9:22 am

Three veins angioplastied.  One renewed life.  
User avatar
BooBear
Family Elder
 
Posts: 339
Joined: Mon Mar 01, 2010 4:00 pm
Location: Chicagoland

Advertisement

Postby Brightspot » Thu May 20, 2010 9:31 am

Great response and feedback! Cogent and well stated. Thanks for taking the time and effort involved.
User avatar
Brightspot
Family Elder
 
Posts: 207
Joined: Fri Jan 15, 2010 4:00 pm
Location: Vancouver, Canada

Postby Flashover81 » Thu May 20, 2010 10:04 am

Nice!!!!!!!!!!!!!!! That's what has to be done, The people that have MS are not saying it's a cure all. But like the article says (if it can stop progression or even slow it down more than the drugs out there will) Is that a soooooooooo terrible!!!!!! People (old school Neuro's and Pharma) are so quick to pass judgement on something new that goes against the NORM..... We need more thinking oustside the box. Let me rephrase that (thinking outside the box with common sense)...
User avatar
Flashover81
Family Member
 
Posts: 31
Joined: Tue Apr 20, 2010 3:00 pm

Postby belsadie » Thu May 20, 2010 11:29 am

I just left the chat room on MS World.org. I couldn't believe the response when i mentioned CCSVI. Here we go: There is no cure for MS., someone has died from the procedure, don't buy into the get a quick fix routine, and I could almost palpate the hostility coming through. No on even knew what CCSVI stood for....I tried to explain,,,no good,,,I suggested to keep an open mind....Whoa, that went over like a lead balloon.One person was asking questions but was quickly steered away from continuing by some others. So, I just suggested they Google CCSVI and follow the links.....I know this site is run by the MS Society, but it just seemed that status quo was all that would be tolerated. I tried. I think the only way this intervention will be considered is if mainstream medicine adopts it and this will happen when enough of us get liberated and prove its efficacy.
So ONWARD and UPWARD...Excellcior [that was my high school motto]
User avatar
belsadie
Family Elder
 
Posts: 106
Joined: Sun Mar 28, 2010 3:00 pm

Get liberation. Even if you have to go to another country.

Postby 1eye » Thu May 20, 2010 1:49 pm

Yes. Get Liberation. Get it now.

I have seen nothing but name-calling and false concern over 'MS' patients from opponents of this treatment. Get liberated, so you can bring whatever you have left to bear in this fight. You will win.

I have to stop my hunger strike on account of heart problems. Seems piddly, only three days, but I did get hungry. But I promise to keep on fighting till my last breath of air.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2893
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Postby PCakes » Thu May 20, 2010 2:37 pm

1eye..i agree!! I am tired of having to choose the right words.. cure..not a cure.. less focus on semantics.. more focus on science, diagnosis and treatment!! call it what you will.. to hell with them.. !
Merriam-Webster
Websters Main Entry: cure
Pronunciation: \ˈkyu̇r\
Function: noun
2 a : recovery or relief from a disease

I read http://jnnp.bmj.com/content/80/4/392.full.pdf for the umpteenth time today as a reminder of the sweet simplistic sensibility of this science.. ahhh was a like a glass of cool water.

of note.. weather here today..sunny / cloudy / sunny / rainy/ sunny bouncing madly between extremes with my symptoms in tow. I googled this phenomena wayyy back when my neuro said piishaa.. nope, no CNS correlation but look at dis.. yes m'dears.. the human cardio-vascular - circulatory system yuppers.. http://www.dartmouth.edu/~cardio/provid ... itude.html
User avatar
PCakes
Family Elder
 
Posts: 849
Joined: Sun Dec 13, 2009 4:00 pm
Location: Canada

Postby blossom » Thu May 20, 2010 2:50 pm

belsadie was on ms world and could not believe how ccsvi was looked at. if anyone there had looked at it. my point is anytime i have been able to approach anyone be it a doctor,someone with ms or an ordinary person. nobody has even heard of it. how can we reach the many doctors we will need if people with ms don't know about it so there will be more people out there looking for these doctors and pushing for testing and treating. my bet is more do not know. you can bet the ms societies aren't going to talk about it much and if it is mentioned will all the truth be told. i haven't read anywhere where that someones neuro. told them about ccsvi. i had mentioned free radio discussion programs getting together and running a full page add in a major newspaper and someone that has the savy write it up so it is done right. put a picture of someone who was liberated a face and name always brings things home. i just know it is going too slow and the more individuals that know the more chance of finding doctors and the more demands for the testing and treatment. in business we call it supply and demand. advertiseing works!! we are allowed to advertise and we have something worth selling. it is not like we are selling anything that doctors don't already do for bad veins. we are selling the "idea" that this same procedure has been known to improve ms symptomns or stop progression after getting the vein problems fixed that could not be good for you under any circumstances.
User avatar
blossom
Family Elder
 
Posts: 1368
Joined: Thu Dec 03, 2009 4:00 pm
Location: south western pa.

Postby ikulo » Thu May 20, 2010 3:17 pm

Msworld.org is heavily moderated. I'm surprised they even allow posts about CCSVI.

Moreover, MSworld.org is also sponsored by many companies we're very familiar with: http://www.msworld.org/support (Unlike TIMS which does not accept corporate sponsorships - yay for TIMS!).
User avatar
ikulo
Family Elder
 
Posts: 444
Joined: Tue Aug 04, 2009 3:00 pm
Location: colorado

Postby Johnson » Thu May 20, 2010 3:25 pm

1eye, I am relieved that you have resumed eating. The right foods are medicine. I'm also sad to think, nobody amongst the nay-sayers would give a hoot if we all died tomorrow - other than the repercussions on their public statures. You can be sure too, that someone well-meaning (or not) might step in with a judicial order for care - after all, we do have impaired cognition... It might be to your detriment in more than calories.

Food in our bellies to feed the fires in our bellies...

Have a good feed!
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby PCakes » Thu May 20, 2010 8:35 pm

Blossom,
I agree! ..another suggestion.. long weekend by myself.. hoping to come up with a design.. will post for critique.. pamflets to carry with, hand out, leave behind.. simple, eye catching, bullet points with links to more info.. i am not an arteest.. ideas gratefully accepted..
User avatar
PCakes
Family Elder
 
Posts: 849
Joined: Sun Dec 13, 2009 4:00 pm
Location: Canada

food

Postby 1eye » Thu May 20, 2010 8:51 pm

Yes I think we are very irritating, and I hope those who deserve it have quite an itch. I think we should all get them thar cameras and rub their noses in it.

Calories are good. I like calories. mmmmmmm. Free your veins NOW! 8) 8)

I'm careful. I read about the Irish hunger-strikers killed by force-feeding.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2893
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

thanks Boobear

Postby Timhuskyfan » Thu May 20, 2010 9:52 pm

I was a bit surprised they printed my rebuttal, but glad to see it. I emailed about 6 of their editors, and one replied and asked if they could publish it. I suggested that a retraction or correction to the original would be better but that I was happy to have them print it.
User avatar
Timhuskyfan
Newbie
 
Posts: 2
Joined: Wed May 19, 2010 3:00 pm

Postby BamBAM » Thu May 20, 2010 10:16 pm

I was recently Kicked off Health Boards MS forum for trying to spread the word about CCSVI, I posted some info and links to CCSVI papers and websites, I had 2 repies by fellow MSers who hadnt heard of Zamboni or his work, After the 2 replies i had one from a Moderator who basically told the people it was another Miracle cure that wouldnt pan out and would go away in a year, She also mentioned that there already was a death due to the procedure, My reply to her was How dare she spread misinformation and turn people away from CCSVI,I told her she could be helping so many people by spreading the word, Needless to say the next time I checked my post it had been deleted and later I got the E-Mail stating my account had been suspended, Its just frustrating when You want to spread the word and try to help people and get shutout, Those poor people who go to that forum for help are going to have to find out about CCSVI on there own
Its not about the disability, Its about the ability!
User avatar
BamBAM
Family Member
 
Posts: 25
Joined: Sun Dec 20, 2009 4:00 pm

Postby PCakes » Thu May 20, 2010 10:39 pm

bam bam.. i'm betting that you have touched some lives with your thwarted efforts and they in turn will share with others.. good job!
User avatar
PCakes
Family Elder
 
Posts: 849
Joined: Sun Dec 13, 2009 4:00 pm
Location: Canada

that's what i'm talking about

Postby blossom » Thu May 20, 2010 11:24 pm

pcakes, when i talk to most people i tell about ccsvi i explain the basics about it because i don't have the expertee of some people on this site. but i give them a list of places to google on the internet. of course doctors i have the paperwork suggested to take to them. i am going to get my brother to place some info. in the laundromats, stick some up on bulletin boards that you see like in restaurants and businesses. anywhere where i can think of where someone may take a look. this may be off the wall and haven't decided for sure but there are patriot (tea baggers) groups forming in our area, and all over the country they have reg. meetings etc. these are good honest people not a bunch of radicals like the news was painting them and i think they made a statement that is heard loud and clear at the election polls the other day. anyway, we all know politics are involved in this too. not saying what i'm gonna do with this idea but for sure i am gonna make sure they get info. on ccsvi. hell, when a person can't even sign an informed consent and get a treatment that is already being done that can possibly help them by doctors that want to treat them because it could help them and has little risk-- we all know what is going on here. like i said i don't know quite what to do with this idea but right now it's an idea. it's not like we are trying to get a head transplant. i'd like to leave ccsvi info. in my neuro.'s waiting room. then be a fly on the wall.
User avatar
blossom
Family Elder
 
Posts: 1368
Joined: Thu Dec 03, 2009 4:00 pm
Location: south western pa.

Next

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