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

What is the best way to contact Dr Simka?

Hi, the subject says it all really.

Thanks to the good people on TIMS I have learnt a great deal about CCSVI and I would like to start the ball rolling to get tested (and hopefully treated).

Is there a proper way to engage with Dr Simka? I have found his email address via this forum but I'm wondering if there is a formal way or process that I should follow to get his help? ...
Read more : What is the best way to contact Dr Simka? | Views : 2336 | Replies : 12

Going to Motown, counting down the days !!!

It's exactly 3 weeks until my husband and I drive from St. Louis to Detroit (about 9 hours) so I can be scanned by Dr. Haacke with his protocol. This morning I had the required GFR blood test to make sure my kidneys are OK. I think Paula Morton RN, Dr. Haacke's research coordinator should have all my information this week. So now all I have to do is wait. I know this isn't as ...
Read more : Going to Motown, counting down the days !!! | Views : 3867 | Replies : 25

Thousands Of NMO Patients Misdiagnosed w/ MS

This article on Medical News Today is the first time I’ve heard of Devic's disease or neuromyelitis optica. And it sure does sound a lot like Multiple Sclerosis.

Mayo Clinic Neurologist Reports: "Thousands Of NMO Patients Are Misdiagnosed With Multiple Sclerosis"

NMO is a rare and debilitating disease that attacks the optic nerves and spinal cord, often causing vision loss, paralysis of legs and arms, and sensory disturbances. ...
Read more : Thousands Of NMO Patients Misdiagnosed w/ MS | Views : 2369 | Replies : 12

Zombie Science

Zombie science: A sinister consequence of evaluating scientific theories purely on the basis of enlightened self-interest

Thanks to Thomas for posting this on the general thread-

Summary- Although the classical ideal is that scientific theories are evaluated by a careful teasing-out of their internal logic and external implications, and checking whether these deductions and predictions are in-line-with old and new observations; the fact that so many vague, dumb or incoherent scientific theories are apparently ...
Read more : Zombie Science | Views : 5699 | Replies : 31

Dr. Dake contact info

Does anyone have Dr. Dake's contact info? so I can try to avoid the operator and possible get some info for my GP so I can get this process started. Thank you
Read more : Dr. Dake contact info | Views : 1330 | Replies : 0

Crossing My Fingers...

I'm "new" here too. I am so excited about CCSVI. I have been telling everyone about it. I have sent all my paperwork to Dr. Dake, just waiting to hear back from him. My mom wants to have all of her 7 children tested for CCSVI, when it becomes more available, because she has 2 daughters and a sister with MS and two other daughters who are starting to show possible signs of MS. I ...
Read more : Crossing My Fingers... | Views : 2733 | Replies : 11

Poems on my MS - pre and post CCSVI

Poem on my MS - Pre CCSVI
Tuesday January 13, 2009
Jill Nolan

What am I but this custard ?
These ion pumps and channels
This mess of ganglia and pathways
and cortex, all in an ancient salt sea,
Organized by energy and time into crevasses and bumps
and neurotransmitters going hither and thither
Flowing to say wake ! and sleep ! and cry !
And I am at it's mercy, it is without mercy. ...
Read more : Poems on my MS - pre and post CCSVI | Views : 1736 | Replies : 6

Should PPMS'ers and SPMS'ers get to "go first"?

Hi all... I'm still really new here, but then again not really, since I've been reading every post on CCSVI for a couple months now. I feel like I know many of you! Thanks for sharing your knowledge and experiences.

I've had Dr. Dake's address and phone number sitting on my counter for several weeks, trying to decide if I should begin the process of getting on his waiting list. It's not that I'm unsure ...
Read more : Should PPMS'ers and SPMS'ers get to "go first"? | Views : 2016 | Replies : 8

A few pics from my scan by Dr. Haacke

I am still waiting on the 3-d images from Dr Haacke, but these scans are pretty telling. For those who don't know, I only have one internal jugular.

If you look at the very bright part of the top of the jugular, then go about one inch down, you can see where the bone from the vertebrae is pinching the jugular. There is also more narrowing about two-thirds of the way down, which I didn't ...
Read more : A few pics from my scan by Dr. Haacke | Views : 2563 | Replies : 12


I ran across this post on another site ( and thought the information might be useful here. It was posted 11/10/09.

I have some contact info for you regarding testing. First of all, in Saskatchewan, at the Saskatoon City Hospital, you will want to call the office of Katherine Knox,MD, FRCPC at 655-8447. The lady I spoke with there is Bev. They say that they will begin testing in a couple of months after some ...
Read more : Canada | Views : 1813 | Replies : 2


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