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

FYI - Buffalo ccsvi study

Hi All:

I just got into the Buffalo Study, Dr Weinstock Guttman is my neuro. I have already received the doppler test and I'm scheduled for the MRI Dec 5th. I just discovered that their not doing the MRV as part of the study anymore. They only planned to do an MRV on the first 250. So, I missed out. Also, they only do an MRI on the brain but my lesion is in my ...
Read more : FYI - Buffalo ccsvi study | Views : 5073 | Replies : 5

How many veins are affected by CCSVI?

I’m still trying to get my head around all of the information that’s on here so forgive me if this has already been answered in another topic somewhere, but....

Are veins ever hampered in other areas related to the spinal cord? I see plenty of people commenting that tests revealed problems in the neck/jugular areas but is there any other veins that connect to the Spinal Cord outside of the head area, and if so ...
Read more : How many veins are affected by CCSVI? | Views : 3031 | Replies : 14

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 : 2235 | 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 : 3674 | 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 : 2197 | 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 : 5377 | 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 : 1228 | 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 : 2594 | 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 : 1656 | 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 : 1884 | Replies : 8


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