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-   -   CCSVI: Separating Fact from Fiction (https://www.neurotalk.org/multiple-sclerosis/109409-ccsvi-separating-fiction.html)

Brian1958 12-06-2009 11:41 PM

Quote:

Originally Posted by Debbie D (Post 595375)
Great thread, Marc. Thanks.
I brought the subject up to my neuro this morning...he stated that we all have to keep an open mind, but that over the years there have been many procedures, even "cures", that were proven wrong...
he also questioned the increased incidence of MS in women and those further from the equator...and how that would make for stenosis in the jugular veins...:confused:

If the vein blockage/narrowing causes an excess of Iron in the brain...Which in turn causes my MS symptoms,,, Then could the increase of MS in women be tied to women taking more iron supplements that men? Just a thought.

barb02 12-07-2009 09:58 AM

I personally have never taken iron supplements. My tummy just cannot handle iron.

Snoopy 12-07-2009 10:28 AM

Quote:

Originally Posted by Brian1958 (Post 597239)
If the vein blockage/narrowing causes an excess of Iron in the brain...Which in turn causes my MS symptoms,,, Then could the increase of MS in women be tied to women taking more iron supplements that men? Just a thought.

I do not take a womens multi-vitamin that has extra iron nor will I take iron supplements, my bowels cannot handle iron. My multi-vitamin is the kind men or women can take so my iron intake would be no more than what it would be for a man.

Dejibo 12-07-2009 11:37 AM

for many years I have taken the senior vitamins because they have low or no iron in them. Maybe I was doing myself a favor.

I cant wait for more studies to be done. :cool:

dmplaura 12-08-2009 12:02 AM

I took iron-containing multivitamins for years without even giving them a thought :cool:

Lady 12-08-2009 10:02 PM

Hi Brian and Welcome,

Women monthly lose iron so they do tend to replace it in vitamins, but not in excess. Some don't take any replacement iron.

The food we eat has much iron in it. Not just meat. Anything grown in the ground has iron in it. Our cooking pot and pans, and utensils, especially the cast-iron ones our parents used.

Many pregnant women take iron in their baby-multi pill. But the baby takes that to use to build it's own body and health. Maybe the baby taking the iron is the reason why women feel so good when pregnant with no relapses of MS?

Then after the birth they still take the baby-multi and relapse as iron restores. We used to wonder why women had protection from MS attacks during pregnancy, it may not be EPF (early pregnancy factor) as once thought. It may be the baby taking the excess iron.

More women get MS than men. Maybe they lose more iron monthly, but store more to recoup the monthly loss? :confused: It's a long shot, but you never know.;)

Xopher 12-12-2009 01:34 AM

Quote:

Originally Posted by marcstck (Post 595232)
I just posted this to my blog, in response to the massive waves of misinformation and misunderstanding that are flooding the MS forums and chat rooms regarding the CCSVI theory.

All comments are welcome.

Marc, thank you for the information you've posted here and elsewhere. I very recently stumbled upon your Wheelchair Kamikaze blog, rather it stumbled across me via a Google MS alert, and I've since subscribed. You are an extremely eloquent writer, among other obvious talents.

Although I am also extremely excited about the potential relevance of CCSVI and MS, I agree that caution and patience are in order to validate Dr. Zamboni's research and claims. It's encouraging that quite a bit of action regarding further study and validation seems to be taking place sooner rather than later. One of these is Dr. Zivadinov's Combined Transcranial and Extracranial Venous Doppler (CTEVD) Evaluation in MS and related Diseases study taking place through the University of Buffalo and Buffalo Neuroimaging Analysis Center. I believe they're seeking 1,100 MSers and 600 non-MSers as a control group for the study, which can be applied for on-line. If selected, all testing procedures are paid for by BNAC, although there is no financial compensation for travel, lodging and related expenses. I did fill out the on-line application, and would gladly pay my way, but was dismayed to read that no Doppler or MRV reports will be given to participants or to their physicians. Yet this is precisely what individual participants will desire to know. For all but local or nearby volunteers, I'm afraid once it becomes clear to traveling participants that they'll get no returns on their expenditure other than perhaps a thank you and the knowledge they've helped move this study along, there will be many who will not follow through if accepted, which could potentially greatly delay the study. I personally would not be able to justify the expense of the trip if this is to be the case. If I've understood this "no results will be given to participants or their physicians" correctly, hopefully they will reconsider this. If anyone has any further information or insights, I'd be eager to know of it. Thanks in advance.

dmplaura 12-13-2009 06:21 AM

Quote:

Originally Posted by Xopher (Post 598897)
I believe they're seeking 1,100 MSers and 600 non-MSers as a control group for the study, which can be applied for on-line. If selected, all testing procedures are paid for by BNAC, although there is no financial compensation for travel, lodging and related expenses. I did fill out the on-line application, and would gladly pay my way, but was dismayed to read that no Doppler or MRV reports will be given to participants or to their physicians. Yet this is precisely what individual participants will desire to know. For all but local or nearby volunteers, I'm afraid once it becomes clear to traveling participants that they'll get no returns on their expenditure other than perhaps a thank you and the knowledge they've helped move this study along, there will be many who will not follow through if accepted, which could potentially greatly delay the study. I personally would not be able to justify the expense of the trip if this is to be the case. If I've understood this "no results will be given to participants or their physicians" correctly, hopefully they will reconsider this. If anyone has any further information or insights, I'd be eager to know of it. Thanks in advance.

I got the same info about this data collection in Buffalo and I think it's great that doctors are collecting at this point, but I tend to agree with everything you've said about the collection of results and how they're not being given to our own doctors.
I live way far east in Canada, and I did get the email with the stuff to fill out, but declined because of the distance/work scheduling.

marcstck 12-15-2009 02:25 PM

Quote:

Originally Posted by Xopher (Post 598897)
Marc, thank you for the information you've posted here and elsewhere. I very recently stumbled upon your Wheelchair Kamikaze blog, rather it stumbled across me via a Google MS alert, and I've since subscribed. You are an extremely eloquent writer, among other obvious talents.

Although I am also extremely excited about the potential relevance of CCSVI and MS, I agree that caution and patience are in order to validate Dr. Zamboni's research and claims. It's encouraging that quite a bit of action regarding further study and validation seems to be taking place sooner rather than later. One of these is Dr. Zivadinov's Combined Transcranial and Extracranial Venous Doppler (CTEVD) Evaluation in MS and related Diseases study taking place through the University of Buffalo and Buffalo Neuroimaging Analysis Center. I believe they're seeking 1,100 MSers and 600 non-MSers as a control group for the study, which can be applied for on-line. If selected, all testing procedures are paid for by BNAC, although there is no financial compensation for travel, lodging and related expenses. I did fill out the on-line application, and would gladly pay my way, but was dismayed to read that no Doppler or MRV reports will be given to participants or to their physicians. Yet this is precisely what individual participants will desire to know. For all but local or nearby volunteers, I'm afraid once it becomes clear to traveling participants that they'll get no returns on their expenditure other than perhaps a thank you and the knowledge they've helped move this study along, there will be many who will not follow through if accepted, which could potentially greatly delay the study. I personally would not be able to justify the expense of the trip if this is to be the case. If I've understood this "no results will be given to participants or their physicians" correctly, hopefully they will reconsider this. If anyone has any further information or insights, I'd be eager to know of it. Thanks in advance.

thanks for the kind words about my blog.

My understanding of the Buffalo study is that although you will not get a radiologist report on what your imaging results showed, you will be able to get discs of the images themselves. Therefore, you will be able to take them to a local radiologist or neuroradiologist for interpretation. This will give you a head start on getting any stenosis that is found treated, should the theory prove to have validity.

mrsrk 12-23-2009 04:10 PM

Thank you Mark!
 
Quote:

Originally Posted by marcstck (Post 595232)
I just posted this to my blog, in response to the massive waves of misinformation and misunderstanding that are flooding the MS forums and chat rooms regarding the CCSVI theory.

All comments are welcome.

I enjoyed reading your post...Just what I needed to hear..The nuts and bolts...:) I am hopeful...


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