2nd attempt at Participation in CCSVI thwarted

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

2nd attempt at Participation in CCSVI thwarted

Postby Hope66 » Tue Apr 13, 2010 5:49 pm

Hi All...

I'm pretty frustrated right now. I thought I'd throw this out there for opinions/advice. On the upside, I think I have another GP who may be willing to write a requisition for testing at Dixie Xray in Woodbridge. Just need to vent but any input is welcome.
1st attempt: I contacted my local MS Clinic in London ON requesting their assistance for the BNAC study...they refused to assist any patient requesting such assistance as they claimed to be overloaded with requests after the November 2009 W5 show aired.

2nd attempt: Yesterday I went to my GP requesting a requisition for doppler ultra sound testing at Dixie Labs in Woodbine and was refused.

These were my thoughts after the appointment yesterday 12Apr10 (very rough notes). Any thoughts/feedback is welcome.

A very frustrated
Interupted twice right at the beginning by door knocks, once left the room for a few minutes, the other time just consulted with {his secretary}at the door.

\When he asked, so where is this going, what happens when the tests come back? I said, my plan is that if these tests come back showing stenosis, I will then pursue a complete tests at either False Creek in BC or Westmount Medical Imaging in Montreal at my own expense. Then I will need to find a vascular doc willing to do the surgery. Part of his response was, Well, what am I doing to do, go through the phonebook and call all the vacular surgeons until I find one who knows what I'm talking about?"

"I'm part of the old boys club" "I'm really very conservative" I really don't feel comfortable sending you for tests when I don't know what they are and don't know what to do with the inforrmation when it comes back."

"This sounds experimental to me. Sounds like this will just open a can of worms and it will just get complicated" (paraphrasing, but something to that effect).

I made reference at least once to the research I had given him (in December?) regarding CCSVI. He did not acknowledge that he remembered this, much less had read any of it.

Attempted to explain the research and telling him where to find more info, reccommended W5 shows from Nov and Apr (he wrote the dates down wrong). Also recommended website This is MS, but he cut me off and said that he wouldn't have time to look at that and W5 was probably all he could do then said, "when you're sick you have time to look at these things on line, I don't have time with my practice etc etc"

Dr {***} encouraged me to find another Dr, maybe a specialist who knows more about this who would be willing to make the referral. I said, "So you want me to go out and find another Dr to write the requisition, but I'll have to get a requistion to see that Dr from you. He replied that that would be correct and appeared not to see any issues with this. He explained that that way he would have someone to talk to about further tests, procedures etc. ??? Does that make any sense? Seems like a wild goose chase to me. What Dr is going to give me the time of day without a referral to see him in the first place? And if I was going to get a referral to another Dr, why would I bother going back to Dr Saly about this? Or maybe that was the point?

Since when are patients required to come up with their own referralls (further come up with a Dr that will give me a referral for the test, but whom I will have to have a referral to see in the first place??? How much sense does that make?

At the end of the day he refused to give me a referral to a specific place (Dixie Xray in Woodbridge) for a specific test (for insufficient venous drainage from the brain through the jugulars) for which staff at that clinic have been specifically trained to do. Is that in itself ethical? "First do no harm" comes to mind.

In the MS world as in the stroke world, "Time is Brain."

I exlplained to Dr {***} that regardless of CCSVI's connection to MS, if our viens are not draining our brains properly (studies so far say anywhere between %50-&100 of us) then that is an issue in and of itself, regardless of it's effects on MS. I explained to Dr {***} the "cataract scenario" i.e. it seem ridiculous that MSer's are being denied this testing/treatment because it's like saying, "You have MS and you have a cataract, but we don't yet know if the cataract is the cause of MS, or has any connection to MS, so we cannot ethically test or treat you." He seemed to get that, but it did not sway him.

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Postby mangio » Tue Apr 13, 2010 5:56 pm

there are now five locations in ontario doing the testing...if you
want the names pm me
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Postby Johnson » Tue Apr 13, 2010 6:02 pm

If he truly wants to confer with someone who understands, give him Dr. Sclafani's e-mail address (on his thread). Dr. Sclafani has indicated his willingness (and pleasure) to educate other doctors about CCSVI.
My name is not really Johnson. MSed up since 1993
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Postby annad » Tue Apr 13, 2010 6:15 pm

I read these posts about doctors not writing referrals and I get so upset along with you! They have no right to do that.
No matter what center you go to for testing, you do require a doctor's requisition.
Take in all the studies and Dr. Zamboni's work etc. with you and stand up for your rights. Try calling Dr. MacDonald's office in Barrie and speak with them and see what they would suggest you do.
BTW, I left the London MS clinic long ago because they were ice cold and because of their ego centric attitudes.
I feel for you! Good luck!
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Postby PCakes » Tue Apr 13, 2010 8:20 pm

Hi(gh) Hope,

"I don't have time in my life, nor am I really interested, to spend a couple of hours reseaching what might be one of the most influential and far reaching medical discoveries of our time".. sigh.. begs the question.. "and you wanted to be a doctor because.....?"
My GP, although willing to sign on the dotted line, is equally uninterested/ambivalent.

I'm so sorry that you have to deal with this.
You will succeed!
Last edited by PCakes on Tue Apr 13, 2010 10:56 pm, edited 1 time in total.
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Postby ndwannabe » Tue Apr 13, 2010 10:49 pm

PCakes wrote:
"I don't have time in my life, nor am I really interested, to spend a couple of hours reseaching what might be one of the most influential and far reaching medical discoveries of our time".. sigh.. begs the questiion.. "and you wanted to be a doctor because.....?"

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Postby Brightspot » Tue Apr 13, 2010 11:29 pm

Hi Hope66
Don't forget to contact Health Canada to let them know you cannot get appropriate testing and treatment in Canada.

Also you could copy what you have posted and send it as an email to your MP, MLA, Health Ministers (federal and provincial) and federal and provincial health critics. Don't for get the Prime Minister.

I am serious! These people need to start working for us!!! Just a little cutting and pasting can result in several letters.

You can do a web search on find your MLA or find your MP. or find links and sample letters on a tread posted called Canadians write a letter to a politician about ccsvi today. (it is a few pages back)
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Thank you, really, thank you!

Postby Hope66 » Wed Apr 14, 2010 3:42 pm

Everyday I'm humbled by the folks who post on this board. Thank you so much for responding to my post. It means a lot to me.

Mangio: Thanks for the pm, I'll pursue all the avenues I can.

Annad: I'd be interested in hearing what, if any Neuro you went with after leaving the London MS Clinic. Please feel free to pm me. I've had more than one less than satisfactory appt there, and I'm not a "difficult" patient, nor is my particular form of MS 'difficult.' I have found that any question I have, no matter how simple, is quite unwelcome.

PCakes: I still have High Hopes :) I will keep on keeping on. Someone will listen to me, even if I'm just an ant on yet another rubber tree plant!

Ndwannabe: applause welcome, anytime :)

Brightspot: Yes, I will contact Health Canada. It was all I could do not to spout, "Who do you think you work for?????" I think he see's his practice as "his" and "his" alone. We've had some conversations over the years and I believe that his practice, to him, is merely a means to and end...to support his family. Period. End of story. Though I do like him personally, he's never ever gone beyond the routine. That includes interpreting B12 tests that I believe are low, but he's interpreting with old data. As anyone in Canada knows though, it's tough to find a new GP these days, and I also worry that he'll "fire" me as a patient if I become too demanding. He only has 1 other MS patient. Most of his practice consists of young families with the usual vaccines, check up etc and older folks, again with the usual issues.

My sincerest thanks to you all for your input and support. You guys truly do rock :)

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Postby Chrystal » Wed Apr 14, 2010 4:44 pm

Hi Hope,

Try going to a walk-in clinic to get a requisition.

Best wishes,
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Postby Hockeydad » Wed Apr 14, 2010 9:01 pm

I have an undestanding GP, who read my research that I sent him and only asked if the testing that I wanted was invasive. I said no, and he wrote the request. BTW, the Barrie Vascular clinic is doing the doppler procedure for free. They are self-funding ( that's what they said so why do they want my health card..hmm). No matter, I'm going in May. This is the clinic that Dr MacDonald (from the W5 report) works in (or runs, I'm not sure).
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