This Is MS Multiple Sclerosis Knowledge & Support Community

A friend of mine that knows the insiders at the West Mount Square Clinic informed me that they are working seriously on the Zamboni protocol and they are willing to be first movers in Canada to adopt such protocol and offer it for people for a fee of course.

Right now the waiting time is about 2 weeks and costs $450. I wanted to do the doppler for my wife but decided to wait for a while to see their progress.

Thanks ms2009 - ! Keep us posted. I'll post when I see the results from my GP of my ultrasound that I did on the 28th of Jan...

Hi All,
As I've posted this in the past: www.members.shaw.ca/tiderington/hughes.html
"
Why is it difficult to diagnose?
In theory, diagnosis is fairly simple. The blood tests are simple and cheap. The doctor simply needs to think of the possibility of Hughes Syndrome.
Having said that, the features can seem so disconnected in different patients(e.g.memory loss, previous DVT, headaches, previous miscarriage and multiple sclerosis) that the diagnosis of Hughes Syndrome simply may not immediately come to mind.
"
In below you can see the results of my blood work:
ACA Interpretation Negative Study.
RVVT-Interpretation Positive Study
LS PTT Interpretation Negative Study
APA Interpretation Anti-Phpspholipid antibody studies are positive. The anti-cardiolipin
antibody (ACA) assay is negative while assay for "lupus - like" anticogulant antibodies (lupus sensitive PTT, dRVVT) are positive. If patients are sampled while on heparin, LMWH or Warfarin, "lupus-like" anticoagulant assy can be false positive. All APA studies should be repeated after a minimum of 12 weeks to confirm antibody persistence.
Ref: Pengo V. et al. Update of the guidelines for lupus anticoagulant detection, J Thromb Haemost, 2009:7:1737-40. Validated by Dr.Rita Selby

My family doctor doesn't know what it means?! She doesn't even know where should she send me to?
Does any body know which type of specialist should I meet?

Thanks in advance!

Looks like you need a very good Rheumatologist, they deal with
this all day long. There is a doctor in Calgary that
has designed most of the testing for autoantibodies that labs use today
and your physician can consult with him. He is the world leader of autoantibody science. If you want more info please just PM me.

Thanks a lot mangio. Can you give me the contact info of the doctor?

Thank you again.

I'm from the US - can I just call the clinic and make an appointment without a referal from my doctor? I am willing to pay the $450 on my own. Has anyone from the US done this yet?

turbotaguy wrote:I'm from the US - can I just call the clinic and make an appointment without a referal from my doctor? I am willing to pay the $450 on my own. Has anyone from the US done this yet?

I am from the U.S. I was told that they could not see me without a referral from a Canadian doctor, so I'm out of luck.

Hi turbotaguy,

Do you mean Doppler ultrasound ? I called them a month ago and they need a referal letter! But you can call them to check if they still want one?!

@ Enjoyingtheride and tur. . .(sorry can't remember the user names!)

I'm Canadian and I'm going on Mar. 9th for my doppler. If you still want to go, call them again, explain your situation and ask them if they know of any doctors who might be able to write the referral for you. They MUST know doctors. Did they explain why you need a referral from a Canadian doctor? It's a private clinic. . .it's your money.

I posted your information about the medical personnel here:

http://ccsvivictory.club.officelive.com ... onnel.aspx

I am trying to gather a list of all who are willing, or may be willing to prescribe testing, test, or treat CCSVI. If you know of any others, it would be helpful!

Vonna

annad wrote:@ Enjoyingtheride and tur. . .(sorry can't remember the user names!)

I'm Canadian and I'm going on Mar. 9th for my doppler. If you still want to go, call them again, explain your situation and ask them if they know of any doctors who might be able to write the referral for you. They MUST know doctors. Did they explain why you need a referral from a Canadian doctor? It's a private clinic. . .it's your money.

They told me about a walk-in clinic that they are associated with, and suggested I call the clinic to see if I could get a referral if I walked in before an appointment for doppler. I called and left a message. They didn't return it.

I also was puzzled why a private clinic would need this referral at all. They do. I told them I'd pay cash, but they still need a referal. Since this time I've learned of the Buffalo $4500 diagnostic package, so I've shifted my interest in that direction anyway.

Could you possibly provide the phone number for this clinic Enjoying the Ride?

I can't afford 4,500.

I'm sorry, I am asking for the phone number to the walk in clinic that they referred you to. I am in the US and would need a referral. I can't afford the 4,500 that Buffalo wants, and may can afford the 4,500.

Thank you!

Vonna wrote:I'm sorry, I am asking for the phone number to the walk in clinic that they referred you to. I am in the US and would need a referral. I can't afford the 4,500 that Buffalo wants, and may can afford the 4,500.

Thank you!

Oh, sorry. I think I had it on scratch paper and it is gone now. However, if you talk to the folks at the clinic to schedule your doppler, just ask them for the number at the walk-in clinic attached to them. good luck.