Has Anyone Asked, And Been Told No? (Canada)

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

Has Anyone Asked, And Been Told No? (Canada)

Postby JSTCD » Tue Nov 24, 2009 2:21 pm

Has anyone in Canada asked thier GP or Neurologist for a referal to have thier veins checked and been told "NO"?

If "No" what arguements are they using?

I'm only interested in "can i get the diagnostic procedures" at this time, as "can I have it done" is a whole other ball of wax.
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Postby jimmylegs » Tue Nov 24, 2009 5:01 pm

i have a cautious GP who is not saying 'no' but more like 'make sure you want to know what might be bad news'. we are looking into things veeerrrry slowly.
i am not sure if my inquiries have even made it as far as my neuro yet. but i have passed along info about this site and the ccsvi developments.
then the w5 broadcast happened, so if he did not get around to reading about it before, i suspect at very least the rumors are out in the hospital by this point!
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Postby BCSailor » Tue Nov 24, 2009 5:15 pm

I think the doctors don't know what we're asking for.
This is a specialized US or MRV
Does anyone know who is doing this in Canada?
BC?
Victoria/Vancouver?
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Postby dignan » Tue Nov 24, 2009 7:34 pm

BCSailor, I'm not completely sure, I think the answer to your question is nobody. So far I haven't heard of anybody getting the tests done in Canada, let alone one of the procedures. I hope you get a flood of responses that prove me wrong.

I grew up in Victoria (Gordon Head) but haven't lived there for 15 years.
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Postby SammyJo » Tue Nov 24, 2009 8:25 pm

Go to http://www.ms-mri.com/collaborators.php

Dr Haacke (you saw him in the CTV docu) has several collaborators in Canada who are at least doing the diagnostic scans. Perhaps you could get that part done, and be ready when an interventional radiologist steps forward.
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Postby JSTCD » Wed Nov 25, 2009 7:23 am

By all reports Dr Haacke is swamped, and it looks like he was only looking for 10 people from each center.

Even then this is the "join a study" route. which is fine, but no substitute for the "get my GP to refer me for tests" route.

I'm very interested in knowing if you can get refered to be tested, and be covered by OHIP, by just requesting it from your regular doctors.
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Postby ozarkcanoer » Wed Nov 25, 2009 7:32 am

I have been accepted into Dr Haacke's study. It is a pilot study with just a few people. If you look at Dr Haacke's website you will see his disclaimer. He does not do the doppler sonography that Dr Zamboni and Buffalo are using. MRI imaging may not find every venous problem. He states that further doppler ultrasound testing may be required.

What Dr Haacke is trying to do is to change the MRI protocols for every MS patient. We all get MRIs periodically. His hypothesis is that if every MS patient gets their routine MRI using his protocol, then maybe stenosis will be discovered earlier. His study is NOT a sure thing.. His study is research.

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Told NO!

Postby kimful » Wed Nov 25, 2009 9:27 am

I've just been told NO.

I just called the neurologist I see in Toronto - Dr. Hohol at St. Mikes. Her receptionist refused to book an appointment for me after I told her I wanted to talk to Dr. Hohol about getting a new MRI/MRV in consideration of new evidence about CCSVI. She said Dr. Hohol is NOT prepared to do this; that there is not enough evidence etc, and that she is consulting with other neurologists. IF they decide to investigate CCSVI through MRIs then I will be contacted by Dr. Hohol by letter.
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Postby JSTCD » Wed Nov 25, 2009 2:22 pm

I got a private message from another guy who said his doc said NO. (I'll keep all other details private)

This irks me. (well more than irks me)

In terms of cost to the system, the scans are WAY chearper than the drugs, let alone the cost to scociety of all the debilitation that MS causes.

In term of safety, a scan is ZERO risk. MS isn't zero risk, blocked veins aren't zero risk.

I admit the data saying this is real is limited, but there is NO data I've seen that contradicts it. So I don't even think they are following the guiding principle of providing "state of the art care"

Has anyone tried to talk to a doctor and not mentioned MS, just said "hmmm, my head turns red, I get headaches, feels hot & swolen, I wonder if I have a blocked veign or circulation problem"?
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Postby ozarkcanoer » Wed Nov 25, 2009 2:31 pm

JSTCD... I have to reply to your last post. I get something I call "hot-head", LOL. It is TERRIBLE. Along with the headaches and fatigue and lack of sleep I am a walking zombie. It is nice to know that I am not the ony "hot-head" !!! Of course I've told my neurologist about this and also several psychiatrists. I was told I need psychoanalysis and to "deal with my problems". I am now glad to hear it is a physical symptom of MS.
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Postby Miss_Feisty » Thu Nov 26, 2009 2:40 am

I'm going to ask my GP next week. I wouldn't attempt going there with my neuro because in this stage of the game we can guarantee a no.

The way I see it, why ask a neuro about vascular problems?

Anyway, I'll post the results of the inquiry. Cross fingers and toes, but we know a yes may seem too easy.
:D
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Postby Algis » Thu Nov 26, 2009 3:55 am

What I have seen (mscured yahoo group) is a girl named Lydia who has MS; had an exam and that there was no stenose anywhere.
She is very down and then think she might not have MS, or...? she went to Stanford for her exams...
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Not a "no" but stalled...

Postby navelnurse » Thu Nov 26, 2009 5:15 am

We have a fee-for-service MRI center in QC willing to do the required scans and a requisition from a GP but think we need better direction/ help from Dr. Haacke for the imaging center. A "Letter of Introduction" for GPs or Neurologists, describing the intent of the study and outlining the required blood test (prior to contrast) and wording for the requisition would have been VERY helpful. Another "Letter of Introduction" for the imaging center with all directions clearly outlined would really help at this point. It seems that Dr. Haacke was not really ready for the onslaught of people who were going to be heading to their caregivers and asking for these studies. Totally understandable as this may not have been his intent. The studies area very specific and seemingly complex, if not done correctly I assume they will be of no use. Of note, I attempted to log into Dr. Haacke's website this am and received this, "PAGE NOT FOUND". I am hoping that Dr. Haacke has the site temporarily closed down to improve web content... my fear is that they are so overwhelmed and possibly unprepared for the flood after the W5 story that they have closed the site/ study to further communications.
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Postby Algis » Thu Nov 26, 2009 5:29 am

I am not sure why it is closed; but if really necessary; I already downloaded all documents as of Yesterday; and can find a way to provide them = Assuming that the problem is the overwhelming and not a vice in the procedure = Who could assert ???
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Postby kimful » Thu Nov 26, 2009 7:44 am

I agree with Ms Feisty. Why see a neuro for a vascular issue? Since my neurologist isn't going to refer me for tests I'm going to see my GP to see if she can help and take it from there.
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