Local MS sufferes throw support behind Reformed MS group

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

Postby cheerleader » Thu Jul 08, 2010 7:20 pm

yeah, please go local, if you can. You need follow-up care. The US is closer for Canadians than Bulgaria. And please be very wary of any person that likens himself to Jesus while taking money to help you. That's kinda wrong--
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5044
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Advertisement

hey jaguar

Postby livabird » Fri Jul 09, 2010 7:15 am

Hi Jaguar ....
Been a while.... so Paul how are you doing since we last met in Katowice?

Sorry all just needed to say Hi to Paul, was wondering what had happened with him 8O

Jayne is not doing so well, everything is back and she is worse than before.
We are now going to Bulgaria where we believe they will look at the azygos vein.
We have heard of at least 3 other people that went to Poland and have since gone to Bulgaria where the azygos vein was then treated...

Anyways sorry everyone, but really wanted to touch base with Paul again.
User avatar
livabird
Family Elder
 
Posts: 344
Joined: Tue Jan 26, 2010 4:00 pm
Location: northampton, uk

Postby Jaguar » Fri Jul 09, 2010 7:31 am

Livabird-Rick

Sorry to hear about Jayne. This is not easy for her.

My MS has progressed since the procedure in Poland, but I have always been a skeptical believer, so it doesn't surprise me.

I am not ready to believe that I have restonosed, or that blood is clotting my stent. I don't see why I should have any miraculous changes - if venous insuficiency caused a slow buildup of iron in my brain, then a stent and angioplasty should equally cause a slow change. I had already been progressing before going to Poland, so why should there have been an immediate cessation?

I'll wait the 6 months, and go back for a checkup in October.

p
User avatar
Jaguar
Family Member
 
Posts: 90
Joined: Fri Dec 11, 2009 4:00 pm
Location: Montreal

Postby erinc14 » Fri Jul 09, 2010 12:55 pm

MS research projects test theory


"I would note this research, when it is all done and published, will not bring us any notable understanding that we don't already have today," said Ashton Embry, the father of a patient with MS and Member of an MS support group based in Alberta called Direct MS. "This is classic stall research which will delay any real research which will test the efficacy of CCSVI treatment."

http://www.ctv.ca/CTVNews/Health/201006 ... ts-100611/
User avatar
erinc14
Family Elder
 
Posts: 599
Joined: Sat Jun 12, 2010 3:00 pm
Location: Montreal

Postby Jaguar » Fri Jul 09, 2010 12:57 pm

Couldn't agree more
User avatar
Jaguar
Family Member
 
Posts: 90
Joined: Fri Dec 11, 2009 4:00 pm
Location: Montreal

Postby LauraV » Fri Jul 09, 2010 1:24 pm

No surprise with these research grants. They won't come up with anything and will almost certainly contradict Zamboni's findings. These studies are already lacking validity. I'm just afraid they will be used to prevent me from getting treated.
User avatar
LauraV
Family Member
 
Posts: 65
Joined: Mon Jun 14, 2010 3:00 pm
Location: NY

Postby Jaguar » Fri Jul 09, 2010 1:34 pm

After speaking with my neurologist about these funding grants, I realize that there are many neuros who are also very dissatisfied with the grants and feel that the MS Society may have done more damage with badly chosen research projects
User avatar
Jaguar
Family Member
 
Posts: 90
Joined: Fri Dec 11, 2009 4:00 pm
Location: Montreal

Postby belsadie » Sat Jul 10, 2010 2:02 pm

I am So very confused at the confusion.....
Is the NMSS not existing to assist PwMS? OK, that's a given. Why, then, is their knee jerk reaction to a possible answer, at least to some of the mysteries we've been hearing about, ad nauseum, to turn their backs on what just might give us SOME answers. Don't they want to fill that void? and if not, why not? You think they would be shouting from the rooftops about something that is so sensible and straight forward.
Of course demand validation with research and trials; issue a warning of caution, even be reticent to advocate treatment, but still do SOMETHING positive to allow those they propose to care so much about to be hopeful..just a little bit! Why , in Heaven's name, are they SO suspicious about Zamboni, et al? Is there, really, NOTHING positive in their work?
Their $ allocations, pharm. connections are known entities. I believe it's a case of losing your way , getting too big and forgetting why you
have the mandate to advocate for PwMS. Understandable? yep Accpetable? nope. Trying to change their M.O. is spinning you wheels. Looking elsewhere for support and assistance will be more fruitful.
User avatar
belsadie
Family Elder
 
Posts: 106
Joined: Sun Mar 28, 2010 3:00 pm

In Bulgaria the azygus took an hour to unblock

Postby Rifleman » Tue Jul 13, 2010 10:55 pm

livabird wrote:Hi Jaguar ....
Been a while.... so Paul how are you doing since we last met in Katowice?

Sorry all just needed to say Hi to Paul, was wondering what had happened with him 8O

Jayne is not doing so well, everything is back and she is worse than before.
We are now going to Bulgaria where we believe they will look at the azygos vein.
We have heard of at least 3 other people that went to Poland and have since gone to Bulgaria where the azygos vein was then treated...

Anyways sorry everyone, but really wanted to touch base with Paul again.


Ruth restenosed three months after her left jugular (and nothing else) was treated in Poland. In Bulgaria the azygus took an hour to unblock in six different places it was critically blocked. Both the left and right jugulars were also blocked. The Tokuda treatment took place on May 29, 2010 and Ruth is doing well, almost back to "normal" working in the garden and able to carry on for almost a full day. Watch the videos on www.reformedms.org and you will see the set up, doctors, patients, etc. There is a big difference in technique in performing angioplasty on the vein. The Bulgarians doctors take their time and give every patient their full attention. Steven Simonyi-Gindele
User avatar
Rifleman
Getting to Know You...
 
Posts: 11
Joined: Sun Dec 20, 2009 4:00 pm

Stop misquoting me please.

Postby Rifleman » Tue Jul 13, 2010 11:05 pm

cheerleader wrote:yeah, please go local, if you can. You need follow-up care. The US is closer for Canadians than Bulgaria. And please be very wary of any person that likens himself to Jesus while taking money to help you. That's kinda wrong--
cheer


Pleas apologize for your false statement that I am comparing myself to Jesus. We also do not take any money for helping people and never have. Where ever you heard this, you were mislead and you are spreading lies.

Please read the article a couple of times where I was quoted and if you have difficulty understanding what I was saying to the reporter, I will happy to explain it to you.

You can hear me directly on several videos here: www.reformedms.org also on CBC radio.

Aim your guns at the people that are keeping you sick and holding CCSVI treatment back from you.

Best wishes and hope that you will benefit from CCSVI treatment.

Steven Simonyi-Gindele.
User avatar
Rifleman
Getting to Know You...
 
Posts: 11
Joined: Sun Dec 20, 2009 4:00 pm

Postby HappyPoet » Wed Jul 14, 2010 7:51 am

Rifleman,

You're the one who needs to apologize.

Cheerleader (Joan) did no such thing. Edit: Trying to take a higher road.

~HP
Last edited by HappyPoet on Wed Jul 14, 2010 9:01 am, edited 1 time in total.
User avatar
HappyPoet
Family Elder
 
Posts: 1401
Joined: Thu Jul 09, 2009 3:00 pm

Postby Cece » Wed Jul 14, 2010 8:43 am

We all know that journalists will use quotes in the most sensationalistic way possible.

here is more of the quote, it's not that bad:
Simonyi-Gindele’s wife received the liberation treatment on two separate occasions. He is frustrated by the politics behind delaying what he and many in the MS community see as the only procedure that’s offered hope and relief from the disease.

“When Jesus Christ raised the dead,” he said, “he didn’t do a double blind study. They’re claiming that chronic cerebrospinal venous insufficiency treatment doesn’t work, but there are thousands of people who’ve had this treatment and are walking around—a large percentage of them are significantly better.”

According to MoneySense, the Canadian MS society spends 48 per cent of their revenue on operating and administrative costs. This is something Simonyi-Gindele says is hindering the progress of offering the more effective treatment.

“They’re a trade industry,” he said. “They represent health care, not patients. If they were for patients, they would see how to make this treatment more available—where instead they are creating obstacles.”


Reformed MS Society has an awesome name.
CCSVI Alliance has awesome people involved in it.

Rifleman, you seem to be assuming that Joan is sick with MS, but it was her husband who was the MSer and he was treated for CCSVI over a year ago. She knows CCSVI backwards and forwards.
"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: 9022
Joined: Mon Jan 04, 2010 4:00 pm

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