Looking for advice

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

Looking for advice

Postby 81Charger » Thu Jan 21, 2010 9:41 am

Hi all I'm looking for some advice.

I was DX about 2 years ago with MS. I started the Swank diet immediatly as well as no dairy, eggs or red meat. I was on Rebif until about 2 months ago when DR took me off.

Now on to what I'm looking for the advice for. I basically feel great I have a few minor symptoms but still work as an auto tech every day with lots of energy. My question is I'm booked to go to Poland in June to have the procedure but should I go thru with this or should I wait until CCSVI is more main stream & possibly available here in Canada? I'd love to get help in staying as good as I can but so far I'm holding my own.

Thanks in advance for any help & opinion's that you might have.
Glenn
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Postby LR1234 » Thu Jan 21, 2010 9:46 am

Hi Glenn,
Have the dr's found any issues with your veins?

I was in a similar situation to you, I was not considered bad (although I do have some definite MS symptoms , see my tracking thread)

I think if there is a problem to fix than fix it, go with the balloon first which is a pretty simple procedure.
I believe it is better to act before the damage is done.
The procedure is minor and painless.
If its a financial issue then start saving. You may have to wait a while now anyway so its worth putting yourself on the list.
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Postby babiezuique » Thu Jan 21, 2010 9:53 am

Come first in montreal To do a doppler at the westmount square inmaging clinic before you go to poland just to know... It cost 450$ and it is not to far from NB ! They do the doppler and follow tha zamboni protocol. I did it tuesday and the result are very good for me:)

And I'm on the list for poland to ...but now i know that i need to be teated:)
Barbara from Montreal
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Postby 81Charger » Thu Jan 21, 2010 1:15 pm

Hi to you both, I have never been checked to see if there is a problem. I didn't realize that they could do that in Montreal.

I know that in B.C they have been having trouble because everyone that they check comes out fine. So the one in Montreal has been finding problems with peoples veins? I just don't want somebody telling me that everything is fine but maybe there is a problem that they can't find, that's why I was going to Poland to have everything done.

Do you have any contact info for Montreal

Thank you both very much
Glenn
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Postby youbetcha » Thu Jan 21, 2010 2:15 pm

81 Charger -

I would go to Montreal for the testing and keep the June appointment you have just in case you need something "fixed".

The best possible outcome is to be referred to a local vascular surgeon or interventional radiologist once you have test results in your hand.

Anyhow, good luck with whatever you decideand keep us posted!
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Postby 81Charger » Sat Jan 23, 2010 10:31 am

Babiezuique, Do you have any contact information for the place in Montreal & do I need a referral from a DR?

Thanks Glenn
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Westmount

Postby fiddler » Sat Jan 23, 2010 1:59 pm

Hi 81charger,
I had the address somewhere but can't find it right now. However, their phone number is 514-939-9764. You can find their address on their web page - just google Westmount Square Medical Imaging.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby 81Charger » Tue Jan 26, 2010 5:14 am

Thanks Fiddler for the number,

If you don't mind me asking have you been tested there? I was just wondering if they had all of the correct testing equipment & if they were finding problems with peoples veins. Also if you were tested, did you get a letter from a regular DR. or a neuro. My neuro is DR. Pniak not sure if you have the same one or not.

Thanks again
Glenn
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Montreal

Postby fiddler » Tue Jan 26, 2010 7:14 am

No, I haven't been tested there -I'm waiting to find out if they really know how to do it. Then I'll have to decide if the information I might get f4rom them, which might be accurate is going to be worth the money.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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advise

Postby esta » Tue Jan 26, 2010 9:57 am

Hi Glen
I hope you go to Poland, like everyone else said, nip it in the bud! It will never have to be on your mind again. That alone is a tremendous benefit to doing something about it all sooner than later. I wouldn't waste my money getting tested in Montréal but ...I'm on the Poland list also and it just seems it will all be resolved there. Anything after that could be years down the road when this is mainstream medicine.
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