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

The Stone Is Rolling - Word is out

**WARNING - GEEKY MOMENT**

I am somewhat of a google super user, and have lots and lots of google new alert, blog search and old usenet searches posted to me via RSS daily.

The majority of the search terms used to be work related (Oil & Gas) but since Mel was diagnosed I've had a lot of MS related searches too.

It's actually quite a trip down memory lane looking at the terms I entered ...
Read more : The Stone Is Rolling - Word is out | Views : 1211 | Replies : 6


Cenaculum Studiorum Bologna 8 September 2009

I am just back from Italy and I wish to share with you my experience in partaking in the first international congress on CCSVI and MS.
First of all I have to aknowledge that the organization of the meeting was impeccable and that the technological support was first class: I felt proud to be Italian and from Ferrara.

Prof. Zamboni opened the proceedings by outlining the key questions the meeting was set to answer and ...
Read more : Cenaculum Studiorum Bologna 8 September 2009 | Views : 3977 | Replies : 16


After Bologna- What can we do?

For those of us wondering, what can we do? There are many things available to us now.
(Maybe a sticky, NHE? I'll let you make the call...)

1. What we can do to find a doctor to treat CCSVI:

If you are an MS patient or care taker, and want to bring CCSVI information to your doctor- go to
http://www.fondazionehilarescere.org/eng/index.html

Every single bit of Dr. Zamboni's research is available ...
Read more : After Bologna- What can we do? | Views : 3538 | Replies : 33


A/B have swelling & water retintion in legs & feet p

My feet and legs are huge, did I mention HUGE!!!

I think I will have to go back on the BP pill to help with all this fluid.

Just wondered it anyone else experienced this.????

I had had a 10 lb weight gain since stented, No doubt where it is, I just look at my feet and legs. Wooow!!

cat
Read more : A/B have swelling & water retintion in legs & feet p | Views : 2549 | Replies : 27


Sept 8, 2009 Bologna CCSVI conference- finalized notes

Home...haven't slept in a couple days, and will do so tonight!
All good. Truly an incredible experience. Below are my notes, transcribed as written. My comments are in parenthesis. To be in a room full of doctors from all different specialties, looking at CCSVI and putting the pieces together was miraculous. Most folks on the board will recognize many of these names and research. The complete picture is coming together-I was honored to be the ...
Read more : Sept 8, 2009 Bologna CCSVI conference- finalized notes | Views : 14255 | Replies : 75


Hello from Helsinki

Hello everyone
My name is Peter and both me and my wife Anu have been following developments on this forum with keen interest for about a month now. Im a Brit who moved to Finland in 1995 ad my wife is Finnish.

We found out late last year that my wife has RRMS and that she had probably been having symptoms for around 9 years. She suffers from Severe heat intolerance, bladder issues as well ...
Read more : Hello from Helsinki | Views : 5647 | Replies : 32


Alex on Vacation and Dr. Dake in Italy?

I understand that Alex is on Vacation this week and Dr. Dake is in Italy i believe. I've compiled my medical history. One pager somewhat like a resume.
Also, have a copy of my 2006 one and only MRI on CD.. When I last talked with Alex she said I could just bring it with me. Have been reading here where others are e-mailing their medical historiesto Dr. Dake. Since I was not advised to ...
Read more : Alex on Vacation and Dr. Dake in Italy? | Views : 866 | Replies : 1


A hole in the skull (not CCSVI, just interesting)

Again, not strictly CCSVI but somewhat related.

The brain's buffer

As well as delivering oxygen to the brain, cerebral blood flow has another vital role: the circulation and production of cerebrospinal fluid. This clear liquid surrounds the brain, carrying the nutrients that feed it and removing the waste it produces, including the tau and beta-amyloid proteins that have been implicated in the formation of plaques found in the brains of people with Alzheimer's (Cerebrospinal Fluid ...
Read more : A hole in the skull (not CCSVI, just interesting) | Views : 1276 | Replies : 2


Thoughts on the spreading of lesions and symptoms in CCSVI

CCSVI is not the only problem in MS, but the immune systems response to exposed CNS matter plays a crucial role in beginning a cascade of inflammation that leads to loss of neurological function.

I have a thought about this. Once the blood brain barrier has been perforated (via reflux, edema, leakage caused by hypoxia) and there's an immune system response against the exposed CNS-matter, this might also affect other areas, and cause new lesions ...
Read more : Thoughts on the spreading of lesions and symptoms in CCSVI | Views : 3529 | Replies : 37


Tysabri "rebound"

Thanks to my brains (Marie Rhodes :lol: ), I have been looking into a rebound effect that is reported in Tysabri. I plan to bring this up to Dr. Dake and right now this is the donkey I'm pinning my non improving tail on. It makes sense and there is a bunch of informatin out there regarding this. This is a quickie article to explain it, but ...
Read more : Tysabri "rebound" | Views : 3040 | Replies : 24


 

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