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by jr5646 » Tue Dec 01, 2009 5:30 pm
Very nice article, Marc… But, here is my take on it all for what its worth.. Taking any risk is a very personal decision. We're all here looking for support and hope to rid ourselves from this dreadful disease.
The beauty of Zamboni’s theory is that it began years and years ago. Way before he began to put two and two together. It’s really not his theory at all, but adding to what was already documented… He has built on previous research and for all intents and purposes seems to have been at the right place at the right time with the right skill set and advanced technological tools at his disposal, not to mention the collaboration with many other researchers of varied disciplines. So, maybe his primary motivation was to help his wife? If true, what a beautiful, non-ulterior motive thing this is.. He wasn’t trying to develop a drug to cash in. The theory has been proven by transferring into a quantifiable test with a quantifiable treatment… in and of itself; and is no longer a theory when that happened.. His findings cannot be reproduced unless folks undergo treatment.
CCSVI is not a drug and cannot be tested as such… so if research on venous blockage in MS patients is required for validation, then have all MS patients tested.. Simple enough, right? Hell, as many expensive MRI’s that we all have – not that the MRI is indicative of symptoms and/or disease progression, what’s one more test? We’ll only have to have one… I even want to have my children tested down the road and if need be treated to potentially prevent MS from occurring in the first place.
CCSVI research AND treatment MUST be continued and needs to forge ahead with full vengeance. It will not have “deep pockets” to back the research like big pharma does, but it “will” have a strong voice of everybody either stricken with or otherwise associated with anybody that has MS.. Especially one like myself who is sick and tired of pharmaceutical greed and neuros that are “advisors” to big pharma and are paid large sums of $ to support, I mean advise them.. The drugs are simply not working…
Anyway, as I contemplate CCSVI awaiting to be tested and hopefully have the liberation procedure, (the phrase “liberation procedure” by the way, was not coined by Zamboni) I can't help but to look at it from all angles. We all have to keep in mind that the majority of us here are "not" trained medical professionals. Even the trained "experts" can, do and will get things wrong or worse yet, come with a vested interest, so we have to take everything we read with extreme caution. Not to mention most Dr.'s spend years and years in specialized areas, so when one area "bleeds" (no pun intended) into another area, they seem to be stubborn, arrogant, and clueless and/or won’t collaborate and pass the buck to the next specialist. So when you see multiple disciplines’ working together though, as you do with Zamboni and team, it sure is a blessing.
Some of the concerns and questions you bring up are justified and I just wanted to add a few more as I'm just as curious:
- Why do they see a higher instance of MS in females than males?
- The further away from the equator one lives or is raised the higher the instance of MS?
- Zamboni found a few MS patients without stenosis - did they really have MS?
- Why doesn’t myelin eating immune cells go after the whole brain and spinal cord?
- Is vitamin D deficiency a hereditary issue?
- Is vitamin D deficiency linked only to the mother of MS patients and not necessarily the patient?
- If the mother of an MS'er is vitamin D deficient, why doesn't all her children have MS?
- You have MS and are not vitamin D deficient, but one of your siblings is... why don't they have MS too?
- Why do they see a larger percentage of MS in Scotland?
- Is CCSVI something you are born with?
- If you are born with CCSVI is it caused by or linked in some way to a vitamin D defincey of the mother at the time of pregnancy?
- I have MS, but why doesn't anybody in my family have it.. (Parents, Grandparents, Brothers and Sisters, Uncles and Aunts, and cousins even?)
- Do twins that develop MS “always” both get it?
- Why do "some” male premature babies have lungs that are not fully developed and in female premature babies their lungs are just fine? Can this explain venous malformation in some but not others and the higher instance of female to male MS?
- Does venous stenosis make one more susceptible to viruses?
- Why do we take drugs for MS that are only 30 percent effective?
- Why do some MS’ers progress while on CRABS and others who choose not to take anything don’t progress?
- Why do we take drugs for MS that may potentially kill us (Tysabri and PML)?
I guess I could go on all day... but my point is that we can conjecture all day, every day and still not have any answers. I don’t think any of these questions can prove or refute much of anything, let alone CCSVI.
I feel that, regardless of all questions... If one is found to have an actual physical vein defect, and they have a procedure to repair it, why not fix it??? Our fine Dr.’s operate everyday all over the world with serious problems, risks and lives on the line and none of us bat even an eye. Parts of us are removed from our bodies all the time that we can live without. People die from complications when having their stomachs stapled; fat sucked out of their asses, breast enlargements, and plastic surgery with folk’s lining up for the procedure(s) all day, everyday without question. All I’m asking for is some blocked veins opened up…
Quite frankly, I think anybody who has blocked veins would be foolish not too have this procedure done whether it be stents or ballooning.. risk and all. Considering the QoL with a DX of MS… crapping and pissing your pants, stumbling around like a drunkard, can’t remember your coworkers names after working with them for over 7 years, oh, and the pain, can’t keep your eyes open past 3 o’clock, (add your own symptoms HERE) etc, etc, etc…
In war, some are on the front lines fighting for everybody else while others are hiding till the coast is clear. I’ll be more than happy to be on the front line fighting as long as I’m still breathing.
My only advice would be to dump any pharma stock you may own that has any ties to MS drugs… my cynical mind fears big pharma, that they will still want us all on meds for the rest of our lives, as will the neuro’s – so finding a “true” cure, is absolutely out of the question for them – well, except if the cure requires us to take drug X forever while they laugh all the way to the bank!
CCSVI treatment is here whether you believe in it or not… and I can feel the ground rumbling beneath my numb feet like a freight train… it may have been slow to start, but it’s rolling now, gaining momentum, and it is going to be next to impossible to stop. There will be plenty of room on the train as is on the sidelines for the naysayer critics…
