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Lyon wrote:

MegansMom wrote:Obviously my daughter would have been considered as a control before June ( when her symptoms started) She obviously had the same 2 stenoses back in June. That's merely my point.

Everyone diagnosed with MS and CCSVI had the malforamations prior to MS diagnosis and at that time may have been considered as a member of a "control group".

I think most everyone would agree with what you're saying but it's not clear what your point is regarding the fact that your daughter could have been considered a control before June.

Is your point that those controls showing positive for CCSVI will eventually be diagnosed with MS?

No, my theory is that some will develop MS and some may not- this is supported by if identical twins don't always both have MS.

I think this happens for a few reasons. Iron load and its distribution has to do with many factors- diet, environment, hormones, activity and hemodynamics are not guaranteed to be exactly the same even if people have the same basic plumbing- too many variables to be absolute.

I do think that there is a more likelihood that they may develop it if they have more severe venous malformations. If the malformation is severe- say a high percentage blockage in several vessels there is a more likelihood.

Examples:

2 sisters both born with the same congenital valve malformation both cause 50% blockage in 2 vessels- 1 develops MS and 1 doesn't


2 brothers both inherit an azygos with a 85% stricture and 2 thickened IJV valves with 85% blockage- both develop MS symptoms - the symptoms may vary.

In the second case the reflux would be more, more turbulence , the sheer stress on the epithelium increased , and probably more symptoms due to hypoxemia and increased iron.

According to DrZ he categorized the location of the anomalies and found that they correlated with the severity and progression of disease. Thus the A.B,C,D typing.

CCSVI is not just 1 malformation type- Zamboni says that you need 2 of more for CCSVI to develop.Some people have 5. Some 2 that are mild. He showed that the more vessels affeted and the more severe they are the more likely the MS is severe and very progressive. Similarly on the other end of the spectrum, if the people have mild malformations- the disease may be seen in 1 and not exhibited by another.

I do believe that any venous malformations set the stage for the possible development of CCSVI-

So if we tested little kids and saw severe malformations we could assume this would later cause problems and MS. In a mild case it would not be so clear cut,

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MegansMom wrote: No, my theory is that some will develop MS and some may not- this is supported by if identical twins don't always both have MS.

MegansMom, what you say might be correct but also want to point out something important that is being missed out wrt to identical twins.
Assuming MS disease has a genetic origin (due to gene defect, that is), it is not necessary that both go on to develop MS. This is because even though they carry exact same genes, the genes are expressed differently. That is, the gene that causes MS can dominate in one sibling and not in the other ...

Stepping aside now ...