Do you really think there will be a cure?

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby Lyon » Tue Apr 28, 2009 7:31 pm

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Last edited by Lyon on Sat Nov 26, 2011 1:25 pm, edited 1 time in total.
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Postby mommasan » Wed Apr 29, 2009 6:48 am

Please stay, Cheer. I just am having a little trouble wrapping my hands around the fact that certain population never or rarely get MS- particularly those people who live close to the equator- whether it's vit. D or Bob's hygiene theory- which definitely has at least a lot of data to back it up (OK, you can take your teeth out now too, Bob). Yet, when those people migrate here, they suddenly do develop MS. There is a huge population of African Americans with MS in NYC where I live. And many of them seem to have a very aggressive disease. I just can't accept that they all suddenly developed this venus reflux when they changed environments.
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Postby cheerleader » Wed Apr 29, 2009 8:09 am

OK, really quickly..I don't want to tick folks off. (I actually meant leaving this thread alone...but I'm staying around on the CCSVI thread.)

I think there is a certain percentage of the population walking around with congenital venous blockage...yet they do not have MS. They may get headaches, fatigue, but no break in the blood brain barrier. This leads to my endothelial research. When there are outside issues such as stress, bad fats, low vit. D, toxins, etc...the blood hypercoagulates, ESR rates go up, CRP goes up, and this creates more serious perfusion and venous congestion. Here is our typical, industrialized western lifestyle exacerbating a condition that might have remained benign. This leads to the break in the BBB, activation of the immune system and MS.

About 3% of the world has venous insufficiency in the legs, but not everyone develops venous ulcers. A smaller percentage get this:
http://surgery.med.nyu.edu/wound/condit ... nous-ulcer

What Zamboni and Dake believe is that chronic venous insufficiency in the CNS is like venous insufficiency in other parts of the body...the hepatic system, the legs, etc. It's just that no one has really looked at these veins before.

Dr. Dake was blown away by the logic of it all...smacking his head, saying, why hasn't anyone thought of this paradigm before? Now that we have MRV, dopplers, higher resolution MRI, the picture becomes clearer.

Jeff's been stable, taking his supplements, exercising, stress reduction...but he still has extreme fatigue, depression issues and leg pain from his one cervical spine lesion (which sits parallel to his jugular blockage) BUT...his jugular veins never worked right. His blood levels were terrible at dx- high ESR, high crp, high liver enzymes. His jugular blockage was exacerbated by stress, bad diet, and a high altitude vacation. Now his blood numbers are perfect and he's stable. It took 43 years of living to manifest as his first MS flare.
Hope this makes a bit of sense...
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby catfreak » Wed Apr 29, 2009 8:36 am

Cheer,

I have not had much time to read all of the CCVI thread and I am so excited for your husband.

I have a comment about the venous thing. I had an AVM (arteriovenous malformation) in both lungs during my first year of life. It was called Multiple Fistula of the Lungs back in the early 60's. Several surgeries later and part of both my lungs removed before the age of 2. Then my son had an AVM in his left lung in his 20's, a year later another one in his right lung. I have never been checked again but they keep a check on Dustin once a year. He had another scare about 4 months ago.

Anyway, this is a hereditary condition and I wonder if there is any connection.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby mrhodes40 » Wed Apr 29, 2009 9:28 am

There cannot possibly be a cure without taking all the physoilogical facts into account.

Thank God work is starting on CCSVI. We'll know more as the work goes forward.
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Postby mommasan » Wed Apr 29, 2009 1:43 pm

Thanks, Cheer. I am not ticked off in any way shape or form. I hope you are not ticked off, either. I just want the whole puzzle to be put together in an indisputable way. This is certainly the only thing that in any way explains the BBB issue in MS. And, I agree with you totally, Marie. Whether it is cause or result of MS it needs to be addressed. I would love to see a study on relatives of MS'ers who are at high risk for MS but don't have it yet. I wonder if they would have the CCSVI issue as predictive of developing MS? If they have it before developing MS, it would convince me 100%. An impossible experiment to undertake.
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Postby sou » Wed Apr 29, 2009 2:01 pm

Just my 2 cents.

pessimist = an experienced optimist

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby mrhodes40 » Wed Apr 29, 2009 2:05 pm

Mommasan read Marion Simka's replicating research on the research thread he had 3 probable MSers: all of them had venouos insufficiency. He actually undertook the study because he had discovered the neck blockages in a probable MS patient and he was surprised as he had not expected that.
marie
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Postby Grumpster » Wed Apr 29, 2009 3:56 pm

Campath labrat here - I'll pray for the best (a cure), but plan for the worst (we all know that story). I still have high expectations for the Campath trial, but I think it may just be a baby step in the right direction, a cure it is not. that is for sure.
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Postby Nick » Thu Apr 30, 2009 2:46 pm

Westwood

Cure is a four letter word to us in the MS community. As has been mentioned above, resolving the damage that has been created by MS is one aspect of a cure and prevention is another.

Polio is considered to be cured but there are still people about who suffer the damage from past active polio. There are even parts of the world where new cases of polio are diagnosed. Suffice to say it is a “controlled” disease.

Harry has stated that it is a very big corner but I prefer to say that the corner is actually a round pole and that the current conventional research will never see the corner for it doesn’t exist in their world.

However I believe the world of MS is entering into a state where we are on the cusp, despite the efforts of most researchers, of full prevention by the simple administration of adequate amounts of vitamin D. I’m sure Harry will scoff at this notion but I feel there is ample evidence at this stage of the process to make such a claim. I won’t bother to state my evidence because I don’t wish to “hijack” your post.

Cheers
Nick
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Postby HarryZ » Thu Apr 30, 2009 4:54 pm

Harry has stated that it is a very big corner but I prefer to say that the corner is actually a round pole and that the current conventional research will never see the corner for it doesn’t exist in their world.


Nick,

I'm afraid I can't argue with you on that one...your comment is likely more accurate than mine.

However I believe the world of MS is entering into a state where we are on the cusp, despite the efforts of most researchers, of full prevention by the simple administration of adequate amounts of vitamin D. I’m sure Harry will scoff at this notion but I feel there is ample evidence at this stage of the process to make such a claim. I won’t bother to state my evidence because I don’t wish to “hijack” your post.


No, I won't scoff at this comment because there very well may be some truth to it. While vitamin D does help, I don't think it is "the one and only" possible answer to the MS mystery. I lean to the theory that MS is made up of several different kinds of causes and may be a syndrome as opposed to a disease.

There is nothing more I would want is to have this disease cured before I pass on but at the moment, I'm not sure that will happen in my lifetime.

Harry

Cheers
Nick[/quote]
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Postby RedSonja » Mon May 18, 2009 4:33 am

Pessimist - glass half empty
Optimist - glass half full
Engineer - glass twice the size it should be

There will be a cure, there will, there will...
Bibo ergo sum
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Postby HarryZ » Mon May 18, 2009 6:23 am

RedSonja wrote:Pessimist - glass half empty
Optimist - glass half full
Engineer - glass twice the size it should be

There will be a cure, there will, there will...


I'm not sure that MS research has found any glass at all !!

Harry
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Postby dignan » Mon May 18, 2009 8:34 am

Harry, I think you're right! Mouse models suggest the existence of a glass, but further research is required...
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Postby Loobie » Mon May 18, 2009 8:49 am

Now THAT's funny :lol:
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