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

Not MSer, but wondering...

Hi, there,

My brother has RR MS. I have many symptoms (the usual: tingling, numbness, loss of strength and balance, cognitive issues) but I don't show any lesions. He has been diagnosed with celiac disease (as has 1/2 of our family) and I surely have it but stopped eating gluten so long ago and am so sensitive to it I can't get the blood test to confirm if I have the antibodies.

Since the neuro ...
Read more : Not MSer, but wondering... | Views : 1159 | Replies : 3

Spreading the news

I belong to the group of people who believed that prof. Zamboni's original idea of the correlation between CCSVI and MS was right, and my belief has grown even stronger reading his subsequent publications and after the congress in Bologna.
We need to accept the fact that even an 100% correlation does not prove cause and effect. In other words, the finding that all MS patients have anomalous drainage of venous blood from the brain ...
Read more : Spreading the news | Views : 7395 | Replies : 77


I know that there has been conversation here about what comes first, CCSVI or MS? But I'd like to begin own discussion about this - cause this might be very hot topic.. or already is. Maybe neurology likes to see that CCSVI is just ms consequence and vascular experts say vise versa.

How many reasons can you say, that CCSVI leads to MS? I have some idea about the CCSVI to MS process, but some ...
Read more : CCSVI MS or MS CCSVI? | Views : 1824 | Replies : 8

Dr. Frohman and Normal Pressure Hydrocephalus

Dr. Eliot Frohman, professor of neurology at Southwestern University- was a moderator and participant in the CCSVI convocation. He consistently had cogent and insightful questions and comments during the day. One of his points has stayed with me, and prompted me to do some more research on cerebrospinal fluid. Dr. Frohman commented that CCSVI was reminding him of his shunting treatment of normal pressure hydrocephalus ...mainly in the fact that the third ventricle was being ...
Read more : Dr. Frohman and Normal Pressure Hydrocephalus | Views : 11642 | Replies : 108

How best to tackle CCSVI with neuro?

Ok, I'm in Ireland, so doubt many CCSVI specialists here, but I am due to see my Neuro in December.

I want to ask about investigatioin for CCSVI. What should I take with me to the appointment? There's so little time I don't want to walk in with a stack of papers. My neuro is very well up on new developments but just not sure how to broach it in the time available......
Read more : How best to tackle CCSVI with neuro? | Views : 2648 | Replies : 14


Hi, Found this online and I was wondering if Niacin could help to reverse mild stenosis and help with blood flow.

2) Niacin (nicotinic acid): We recommend 100mg to 3 grams, thirty minutes before meals and at bed hour, and also during the night if awake – whichever dose will produce a strong body flush. Niacin dilates the blood vessels, even those that have been compressed by scar tissue, allowing a greater amount of nutrient ...
Read more : Niacin | Views : 2267 | Replies : 15

Places that offer CCSVI??

I have been researching for awhile now and couldn't find another place that offers the procedure except for stanford. If anybody has any other information about other places that offer it please share it with us.

P.S.: Can anybody provide me with the contact info of the people in charge of the procedure in Stanford.
Read more : Places that offer CCSVI?? | Views : 1011 | Replies : 1

18 months

It was mentioned in Bologna, that progressive MS is continuing to progress for 18 months after the balloon procedure, and then some recovery is beginning. Any theories on what might be going on with that?

Here's mine: the progressive MS brain and spinal chord are continuing to decline until the buildup of iron (from before treatment) is somehow mitigated by the body. Apparently, it takes the body 18 months to deal with the iron.

Read more : 18 months | Views : 1145 | Replies : 3

Round 2 post

I say round 2 because I think my visit might be more than just a check up on the stents on my right side (my only ones). I will be greatly dissapointed if he says "everything looks great! We're not going back in". I don't imagine that will be the case, but here is the thread where I am going to post what he does decide to do with me next week. I hope more ...
Read more : Round 2 post | Views : 6338 | Replies : 66

CCSVI - Aussie Action!

Hi All,

Just to let any Aussies out there know that Cure and I are on the hunt for vascular surgeons in Australia who might be prepared to become involved with CCSVI. We've got a few names who seem interested - 2 saw Dr Simka's presentation in Monaco and another knows Dr Dake.

Personally, timing is important - the sooner the better; especially with the long hot Australian summer not too far away.

Prof Zamboni ...
Read more : CCSVI - Aussie Action! | Views : 132358 | Replies : 851


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