Dunkempt Goes to Poland 24 March

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

Postby Mathd » Wed Mar 24, 2010 7:26 am

2.5 millions people with MS

2500000/50 persons per week = 50000 weeks

So aproximatly 961.5 years to treat every of us if they are alone!

that's WHY I cant wait to see studies here in canada!
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Postby Vhoenecke » Wed Mar 24, 2010 7:33 am

Hi Fiddler,

I too will be claiming my trip. They better not fight me on this, I will fight very hard.

Val
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Postby annad » Wed Mar 24, 2010 7:39 am

Mathd wrote:2.5 millions people with MS

2500000/50 persons per week = 50000 weeks

So aproximatly 961.5 years to treat every of us if they are alone!

that's WHY I cant wait to see studies here in canada!



Mathd,
you give new meaning to "you do the math!" lol

I've never thought of it that way.

I'm not waiting. Let me rephrase, I can't wait.
:)
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Postby Vhoenecke » Wed Mar 24, 2010 10:26 am

If our country would GET OFF THE POT and start testing we could get rolling with treatment. I can't believe the "wait there's no rush" attitude that the so called professionals have. They shoud be studying us instead we are forced to go to Europe and get everything done. How bizarre.

Val
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Postby esta » Wed Mar 24, 2010 1:45 pm

the numbers are for one place, each new clinic will drop the years it will take.

fiddler, in canada, can we claim this even though the medical world will not cover it untill its in phase 3...
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Postby Katie41 » Wed Mar 24, 2010 2:26 pm

Met Dunkempt, I think, charming man. I've met so many lovely people the last couple of days.

The information "card" I received upon discharge today, was in English and included name, address, date of birth, hospitalization dates, diagnosis,treament (which is medication), procedure, laboratory tests and results, prescription and recommendation. This is all on the clinic's letterhead and signed by Dr. Ludyga. It was all in English. I needed something that stated the times in the clinic. Marta is procuring that for me.

There are three films crews here now. One from Scotland, one from Canada, and one from somewhere else. The more publicity, the better!

Katie41
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Postby Johnson » Wed Mar 24, 2010 10:46 pm

I'm headed over to The National right now Dunkempt ( I love your handle.)

Mathd - Votre anglais c'est plus meilleur do ma Francais. Je me ne souviens pas les classes en ecole, et c'est plus d'Anglos ici en BC. N'est pas des opportunites a parler Francais ici.. Bonne Chance! Oui, je sais - terrible!
My name is not really Johnson. MSed up since 1993
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Postby Mathd » Thu Mar 25, 2010 4:43 am

My nero said that ms society will fund research on ccsvi, and Ottawa U (just on the other side of the river for me!!) will do one, starting the study with screening. he talked about other university in canada, like UBC and an other one in the east and maybe one in Quebec.

OttawaU, for now it's just a rumor and I cant find any informations about this
I'm not even sure they have a 3T MRI machine!!



but anyway, he said that studies are on their way to start, at many places in canada...
it's just too slow!!
And I dont want to do politics but with the government we have right now, they will not pay the bill of 75000 canadian MSer wanting for a new treatment...
so we'll see...




Johnson, your french is not that bad !!
anyway, it's easier to learn english as a second language than french because french language is "Tons of Rules" and "Tons of tons of exceptions"
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Postby livabird » Thu Mar 25, 2010 6:06 am

I JUST FOUND OUT DUE TO A CANCELLATION I GO YO POLAND APRIL 22. I FEEL LIKE YOU DUNKEMPR. I HAVE SUFFERED FOR 30 YEARS BUT IT HAS TO DO SOMETHING THAT IS MY LOGICAL CONCLUSION. NOW I AM JUST IN SQUEAM MODE AS I AM SOOOO SQUEAMISH. LOL OH WELL I WILL KEEP THINKING OF HOW MUCH BETTER I WILL FEEL.

LIVA

P.S. NOT SHOUTING I CAN ONLY TYPE IN CAPS
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Postby esta » Thu Mar 25, 2010 8:07 am

Hi Livabird
i'm so excited for you. its 35 yrs for me and i expect alot of changes. my goodness, just stopping the progression is huge...make sure you write volumes, just like everyone else. its like a good morning happy pill..
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Postby livabird » Thu Mar 25, 2010 10:33 am

THANKS ESTA. I AM HOPING AT LEAST FOR WARM UNTINGLY FEET AND ANYTHING ELSE IS A BONUS. BUT I AM POSITIVE IT WILL HELP ME A LOT MORE. I HAVE SUFFERED OPTIC NEURITIS AND TRIGEMINAL NEURALGIA FOR YEARS. THEY HAVE FOUND THAT NARROWED VEINS ARE IN BOTH OF THESE. AS SOON AS I AM BACK ON MY FEETI WILL POSTS LOADS. HAVING PPMS HELPED ME GET TO POLAND. DR. SIMKA SAID THAT SINCE THERE ARE NO TEAL TREATMENTS HE WOULD TRY TO FIT ME IN AND HE DID. THE ONLY GOOD THING I CAN SAY OF PPMS. LOL

LIVA
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CBC Story on Dunkempt and his brother

Postby fiddler » Thu Mar 25, 2010 3:47 pm

Folks, I don't want to preempt what Dunkempt will probably tell us tomorrow, but the CBC reporter accompanying him and his brother filed this story just a while ago: http://www.cbc.ca/world/story/2010/03/25/mb-ott-brothers-ms-poland-surgery.html
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby annad » Thu Mar 25, 2010 4:26 pm

That's great to hear, so far!
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Postby livabird » Thu Mar 25, 2010 4:30 pm

THANKS FOR ALL THE INFO FIDDLER. IT WAS GREAT TO HEAR HOW WELL THE BROTHERS DID IN POLAND. I CAN HARDLY WAIT TO GO ONLY A MONTH TO GO. HOPEFULLY I GAIN TONS FROM ALL THE POLISH FOOD AND FEEL TRULY LIBERATED.

LIVA
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Postby Johnson » Thu Mar 25, 2010 5:20 pm

Hey, let us chip in to buy Livabird a new keyboard! Laugh.
My name is not really Johnson. MSed up since 1993
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