This Is MS Multiple Sclerosis Community: Knowledge & Support

This is interesting stuff. Everyday there is one breakthrough after another now if they can just get their s*** together and cure us or at least put a stop to the SOB!!! Sorry but got the potty mouth going tonight.


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Scorpion - quoted from the article
My younger daughter was tested by Dr. Dake about a month ago - she had some symptoms that could have been related to MS. She had not been diagnosed with MS prior to the testing. The tests came back, and she had a blockage and she had lesions on her brain. Dr. D. treated the vascular malformation by stenting her right jugular vein. So, here is a case of early symptoms of multiple sclerosis and her brain was not normal. I know she is only one example but, I personally think that if you have a stenosis in your veins, you are going to have lesions. You could have had these lesions since early childhood.
The software tool is interesting and will be of value. I think the CCSVI paradigm is going to change the way MS is diagnosed and treated.
"Just my two cents"
Sharon

Thanks for sharing your personal experience with us all, Sharon. You daughter made a valuable contribution to MS research. Dr. Robert Zivadinov gave a similar example in Bologna. A young woman who was a control in the Jacobs study showed jugular stenosis. Three months later she had her first MS flare and upon completing an MRI and exhibiting lesions she was diagnosed. In both of these cases, jugular scans showing stenosis preceded the MS diagnosis. We already have the technology.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Your welcome Cheer -
Dr. D. is the hero here - he agreed to test both of my daughters. The results were 50/50. The younger daughter had a blockage - she said let's take care of it and he walked her over to the registration for surgery. Four hours later she is in her hospital room with a small 1-1/2 inch stent in her right jugular. I am forever grateful to him for the compassion he showed my daughter and son-in-law.
It is another ah-ha moment in the CCSVI journey.

Sharon

you guys have to start saying "that's just my two stents" lol

I had symptoms way way before the lesions showed. I had 10 MRI's in 14 years all clear even though I had many classical MS symptoms.

That is classic JL.

Sharon that is just too cool. I have thought about getting my daughter tested also, but at 13 I just think it's probably too soon. The only thing that's got me thinking is that my one good friend from work's daughter is seeing Dake Monday or Tuesday of next week. She got dx'd at 19, so maybe I will get that done. You're awesome for doing that for your babies. Plus with this being alluded to as congenital, I just don't know if it would be too early or not. You have potentially given your daughter the gift of life twice! Just awesome.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

This test measures brain volume not vein volume.

Exactly! But what causes the loss of brain volume in MS? Dr. Zivadinov of Jacobs says that the loss of brain volume and gray matter correlates to venous hemodynamic alterations, iron deposition and hypoxia in brain tissue.

http://linkinghub.elsevier.com/retrieve ... 0X09005036

wouldn't it be great to find MS before there is serious brain volume loss? Like Dr. Dake did with Sharon's daughter-

cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

That was my point. Stop it before it ever even has a struggle with plasticity.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

Cheer wrote:
The history of MS is changing before us right now. I know it is too early in the CCSVI paradigm, but I would like to imagine that our children and our grandchildren will be tested at a young age - that this becomes standard practice. Currently, there are young children being diagnosed with MS. A couple of years ago at my daughter's charter school in Phoenix, she had a young 6-yr old girl who was enrolled who had MS. Some days the girl needed the school wheelchair to get around. This little girl was on MS medication! I can't imagine what the drugs will do to her little body in the long term.

Loobie you wrote I think you will have your answer in the not too distant future.

We are all pioneers - each of you has contributed to the future of our children - this is worldly - we have Erika and Gibbs across the seas. I think we all deserve a rousing applause!

Sharon

Scorpion, who stated this thread, said in the Campath forum:



I must say I agree as someone who has got infinitely better from her MS just by taking antibiotics to get rid of the infection that caused it in the first place.

I admit that when I first started on this site I was a trifle over enthusiastic about my treatment, so I can only assume that the CCSVI people are behaving in the same way.

Sarah

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An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.