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

PPMS. High iron levels


I'm a new PPMS UK member brought by researching CCSVI. I'm a 68 y/o male, dx late 1980's, but early symptoms since '70's. Have now been wheelchair bound for about five years, but am not on any medication.

I recently discovered/realised that my deceased mother had suffered from haemochromatosis - iron overload. I had a blood test and it was found I am a carrier of one of the two copies of the gene ...
Read more : PPMS. High iron levels | Views : 2860 | Replies : 5

Amazing resolution from new faster scanner.

Saw the scans on BBC last night. 3D showing phenominal detail of all the vessels and bones. Almost like a perfect model of the internal anatomy.

Acheived in seconds with new machine.

This is going to be great for the CCSVI research.

BBC: check out the video: ... 363756.stm

A scanner at a Cambridgeshire hospital which can examine an entire heart in quarter of a second, is being ...
Read more : Amazing resolution from new faster scanner. | Views : 1522 | Replies : 0

how many repeat procedures?

So my company's health insurance will be changing on Jan 1st, and there is a 50% chance that Dr Dake will no longer be in my network.

I'll be having my initial MRV and probable procedure prior to the insurance change.

If I am no longer in Dake's network, I'll have to find a local vascular doc to do my followup MRV. That's not a problem I don't think.

But I'm sort of worried about ...
Read more : how many repeat procedures? | Views : 1617 | Replies : 2

checking in

Any new breakthroughs/progress in the last couple of months to report? I know, I could go through the threads but I thought this would be easier and quicker!!!
Read more : checking in | Views : 1284 | Replies : 8

UK people having CCSVI tests & procedures done abroad

Perhaps like many of you, I see little point (for now) in trying to convince my GP and Neurologist to organise any kind of CCSVI tests for me here in the UK because they probably won’t be very sympathetic to the proposed links between MS and CCSVI. Even if they were, it would take forever to organise and I doubt that many professionals over here would conduct the tests in accordance with the specific protocols ...
Read more : UK people having CCSVI tests & procedures done abroad | Views : 3304 | Replies : 7

Anyone have Darcy's phone number?

I have Alex's phone number but need Darcy's. Alex's voice mail box is completely full--can't even leave a message now. She must be SUPER busy.
Read more : Anyone have Darcy's phone number? | Views : 1345 | Replies : 2

Liberation Procedure Research on line 11/24

OK. This out of Italy. Dr. Zamboni's paper on the results of the Liberation Procedure patients and their 18 months of followup after the procedure will be here for free on Nov. 24th-

Read more : Liberation Procedure Research on line 11/24 | Views : 3139 | Replies : 4

Who are the BIG names in CCSVI ?

The CCSVI Pioneers :

Dr. Roberto Bergamaschi, Director of the MS Center of Pavia (Italy)

Steven R. Brenner, MD, Associate Professor Department of Neurology & Psychiatry, St Louis University School of Medicine
Dr. Brenner responded favorably via an eletter response to Dr. Zamboni's paper "Chronic cerebral venous insufficiency in patients with multiple sclerosis"

Dr. John Cooke, MD, PHD, professor of cardiovascular medicine, Stanford University School of Medicine

Dr. Patricia Coyle, Stony Brook University Hospital, NY ...
Read more : Who are the BIG names in CCSVI ? | Views : 108448 | Replies : 138

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 : 5179 | 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 : 3189 | Replies : 14


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