Dr. S - TY for answering our questions... I have really enjoyed reading this thread and am grateful you are here.....
Anyway, I've been thinking about the inherited possibility of MS/CCSVI also and in possible prevention in children of 1) Even developing Malformations and 2) Treating any malformations before MS rears its ugly head... From a complete laypersons perspective I can only draw upon my own experiences and take a stab at this for what its worth.
My thoughts on Vitaman D.. The pervalence of ms has been documented as the further away one lives from the equator the higher the instance is seen. Hence the vitiman D theory.
Remembering back just a few short years ago, prior to, and during pregnancy my wife was prescribed pre-natal vitimans. I guess folic acid promotes neurological health and is standard care now...
Wouldn't it be great if a vitiman could be taken (added) to the current prenatal vitaman to promote vascular/vein health?? If one even exists, that could prevent ccsvi from occuring in the first place??
Some debate a potential Vit D deficiency in MS, but I propose that the Mother may be deficient, instead of the person with MS and causes the malformation(s). The ccsvi congenital factor lead me down this road.
I for one was always in the sun growing up and doubt very much that I have a vit D deficiency... possible but unlikely. However my Mom (fair complexion) rarely was in the sun. This may explain a few questions regarding MS/vit D and /or ccsvi.. Birth month and ms has been studied too.. so perhaps being pregnant during the winter months is a factor also.. is it a certain trimester of pregnancy that the lack of sun (vit d) effects vein development?
Hopefully someday kids will be screened for ccsvi, heck we screen and vaccinate for everything else under the sun, so why not? - maybe non-evasive doppler??
Something thats also bothered me is that the bnac (buffalo) study hasn't found ccsvi in the same high numbers zamboni and others have.. I thought it would be interesting to study the ms lesions of those found to have ccsvi vs. those who did not.. The term venocentric has been used when describing lesions.. so do we need Tesla 7 mri's to study this? Since we see many other conditions that have the same symptoms, such as lymes disease, brain stem stroke etc., - do we need another sub-type of ms designated???
OK, now on to why do we see the 2-1 ratio of females vs. males developing ms??? Not sure on this one, but I remember reading somewhere that lung development occurs sooner in girls than boys... so premature female babies have a better survival rate than boys at the exact time of development (premature birth)... perhaps something similar occurs in the formation of the vascular system in utero???
On a side note (rant) - How about Biogen wanting to pair Avonex and/or Tysabri to BIIB-033 (Lingo-1) - which hasn't even been approved.. they tried to do that, unsuccessfully with Avonex and Tysabri.. GREED comes to mind...
No details are available yet on how the trials will be crafted, but Rhodes made clear that the company’s vision is for Lingo to be used in combination with Avonex or Tysabri. The idea is that those drugs can reduce the immune system’s assault on neurons, quieting the storm. That would give an opportunity for the anti-Lingo-1 drug to step in and regenerate myelin around the nerves
YET, we have to wait for a relatively benign ccsvi procedure... my vote is for the liberation treatment and lingo-1 afterwards... However, I find it incredibly difficult to believe that Biogen will come up with anything other than "lifetime" drugs...