Wanting to hear from ms'ers in Atlantic Canada......

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

Wanting to hear from ms'ers in Atlantic Canada......

Postby newfie-girl » Thu Jan 21, 2010 6:25 pm

:wink: :arrow:
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There a ton of us

Postby fiddler » Thu Jan 21, 2010 8:41 pm

in Atlantic Canada, newfie-girl, a fairly active subset, though our chances for local assessment and then treatment are pretty low in the foreseeable future. I don't think I'll have the time to push and wait and hope, so I'm going to Poland.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby newfie-girl » Sun Jan 31, 2010 9:09 am

Hi Ted, so glad to hear from you, I might have know you were a downhomer with a nickname like " fiddler " thats pretty cool. When are you going to Poland? I am so excited for you and look forward to reading about your progress. I am new to this site, so its taking me a while to figure out how it all works. So far its very informative and people are all so very helpful. Again, good luck in Poland, you will be in all our thoughts and prayers, having said that "MAY YA BE IN HEAVEN HALF AN HOUR BEFORE THE DEVIL KNOWS YOUR DEAD" Good luck my friend and keep in touch, as I too am SPMS, and fear time is running out for me..............on this end. :!
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Hope

Postby fiddler » Sun Jan 31, 2010 9:54 am

Hopefully, newfie-girl, there'll be something more happening in Canada soon if the Buffalo study confirms Zamboni's results. The Australian study (did you see that thread) gives further, independent confirmation that MS is not (at least initially) caused by our immune systems.

I expect to get my exact dates soon, but right now am scheduled for an appointment with Dr. Simka for the end of April. I'll be posting information about that as it arrives on my blog (see link below).

If you could get in to see him, would you go to Poland?

By the way, I've lived out east for more than 30 years, but am originally from Manitoba
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby newfie-girl » Sun Jan 31, 2010 10:20 am

Hey Ted, yes I too am anxiously awaiting the Buffalo study, also Dr. Z will be in Hamilton this week to do a workshop, that also should bring good results for Canada. I would prefer to have testing and procedure done here in North America, but right now I'm afraid thats going to take too, too long, and I'm out of wait (to quote Cheerleader0, so yes I probably would consider going to Poland to see Dr. Simka if that were possible. I won't hold bein born in Manitoba against ya (lol) like we say down here your officially screeched in now, bein here for 30 years. Take care my friend.
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My suggestion

Postby fiddler » Sun Jan 31, 2010 10:32 am

My suggestion to you, and anyone else who is willing to pay the price (in money, disruption to their lives) of a sudden call-up from Dr' Simka's team is to e-mail the Patient Coordinator, Euromedic Poland [info@euromedicpoland.com] and let her know that you are interested in having a CCSVI assessment and, if appropriate, treatment... and that you would be willing to come on X days notice if they have a cancellation. I am sure that they will have some cancellations as people chicken out and would want "fillers". That is how Brynn of Spokane, Washington got in WAY earlier than had been originally scheduled (see her thread about the trip).

...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby nicko » Sun Jan 31, 2010 9:44 pm

I've pushed my totally fatigued self into a large contract just to get the extra money needed for this. If need be...

But a cousin of mine in brampton ON told me about her friends daughter with severe MS who pushed and pushed and pushed to get scanned and they did find problems. She said they were booked for surgery. Im waiting for more details on this. But she is not usually the person to make something up especially on this subject. So there is stuff going on in Canada, especially when you see the right people. Neurologists or MS clinics aren't the people to see right now.

I've been pushing a bit here in Halifax, My GP is trying to get me scanned. I left msgs with local Interventional Radiologists. I did email them but the email addresses are no longer used. I'm about to mail them letters.
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Postby 81Charger » Tue Feb 02, 2010 8:33 am

I'm here in N.B booked for Poland not sure if I'll go or wait for something here.....

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