Rewriting the MS story

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Sharon » Thu Jun 11, 2009 4:40 pm

Marie - what is lumen? ][/quote]maybe losing only 50% of the lumen is manageable for the body, but beyond that it starts to [quote]

I am not understanding - DUH!
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Postby mrhodes40 » Thu Jun 11, 2009 4:58 pm

Lumen is the thickness of the middle of the vein like the inside diameter of a pipe.........Sharon the lumen on yours was 99% occludes on one side.
:wink:
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby Sharon » Thu Jun 11, 2009 5:11 pm

Thanks Marie.

Okay - So, Dake talked briefly in his hypothesizing manner ...he said that if my MS was genetic (which he would tend to lean towards since I have a brother with MS), the blockage would not have been as large nor as occluded at an early age. As you age, your lifestyle, your environment, your health have an affect on your body. These things might delay or they might speed up the occlusion process. Again, he was not stating this as fact - he was just talking.
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Postby mrhodes40 » Thu Jun 11, 2009 6:41 pm

But you know the best ideas come out of "brainstorming" where in the people in a company all join a room where the thinking is no holds barred free flow of ideas and let the thought go where it wants to....

I think a little less dogma and a little more brainstorm is good for this field of MS research, particularly before the ideas become gelled and dogmatic which seems to happen with time. I like the idea of Dr Dake speculating about childhood growth and how that might impact this overall, now is the time to consider these things.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby akaheather » Thu Jun 11, 2009 7:06 pm

My favorite part is dissecting old information with this new model in mind. :wink:

You guys may never know how thankful some of us who almost get it but don't have the time to research all the details are.


Put down the pipe and crack open a book. :lol:
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Postby cheerleader » Thu Jun 11, 2009 7:16 pm

mrhodes40 wrote:I was thinking about the blockages earlier today and it occured to me that they are not 100% so perhaps that is why it we get by ....maybe losing only 50% of the lumen is manageable for the body, but beyond that it starts to get ahead of the body's ability to compensate.

Then these other things are a bigger deal than they would be like NO issues or vasocontrictive things, fats in the diet ball up there a little bit etc. Thus it may be true that it is an issue of degree and intermittant lifestyle issues may make the difference.
think so?


Absolutely, Marie!! This makes sense with the early relapsing/remitting stage..where a high altitude vacation or stressful week or having a baby might constrict the lumen. A flare.
Then, the remitting period. A return to a slightly hampered venous system. Life goes on...the doctor tells you how lucky you are to be on Copaxone/rebif. Or, the lucky folks who have only a small bit of occlusion, (benign MS)- tell you it's because they drink red clover tea or wear crystals and they write and sell thousands of books to hopeful MS patients (Yes, Ann Boroch...that's you.)

UNTIL...the vein no longer remits and opens- due to age, repeated inflammatory damage, a move to Colorado, a bad case of pneumonia, you name it. Complete occlusion. What we call progressive MS. If it strikes the jugs, you have SPMS. If it strikes the azygos, you have PPMS.
This is all just rambling and surmising...but I really think this model makes more sense than anything else I've come across.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby chrishasms » Thu Jun 11, 2009 7:31 pm

123
Last edited by chrishasms on Sun Dec 06, 2009 11:53 am, edited 1 time in total.
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Postby Arcee » Fri Jun 12, 2009 6:23 am

Just wanted to chime in echoing Loobie's and Javaneen's points - - it's amazing to track these exchanges. So realistically helpful and encouraging in content and tone. I feel really fortunate to be able to follow along here.
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Postby peekaboo » Fri Jun 12, 2009 6:41 am

Cheer wrote:

Complete occlusion. What we call progressive MS. If it strikes the jugs, you have SPMS. If it strikes the azygos, you have PPMS.
This is all just rambling and surmising...but I really think this model makes more sense than anything else I've come across.


I am PPMS and unfortunately I have/had Jug and azygos occlusion...and my right jug has the beginning of walls thining w/o stent.

I too thinks this model makes sense and I talk freely about it to friends & family who know think the same. Just waiting anxously for healing or stabalization...
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Postby cheerleader » Fri Jun 12, 2009 6:43 am

chrishasms wrote: I continued to spiral downhill fast because I think I smoked cigarettes too.


Smoking is one of the worst things a person w/MS can do. It totally changes the NO levels and causes vasoconstriction. (think: strokes, heart disease)

Analyzing over 2,000 medical records in the General Practice Research Database (GPRD), researchers identified 179 British patients who were originally diagnosed with relapsing-remitting MS, a form of the disease in which symptoms fade and recur in unpredictable patterns. Patients who were current or past smokers were 3.6 times as likely as patients who had never smoked to develop secondary progressive MS, a later stage of the disease marked by steady deterioration of the central nervous system. This disease progression also occurred more quickly in patients who were identified as current or past smokers. The study also supported earlier research showing that smoking may increase the risk of initial MS diagnosis. Current and past smokers were 30% more likely to be diagnosed with MS than those who had never smoked.

http://www.medicalnewstoday.com/articles/23178.php

the irony is, medical researchers could never explain why smoking was so bad for MS.....what does a cigarette have to do with autoimmunity? They said it showed "risky behavior" and smokers were more promiscuous and had more viral exposure (EBV, HPV) WTF???? But in the CCSVI model, the tie-in to vascular health makes complete sense...

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Fri Jun 12, 2009 6:50 am

During labor and delivery activation of coagulation occurs with consumption of platelets, coagulation factors and inhibitors. Obstetric complications during delivery can excessively activate the coagulation system and disseminated intravascular coagulation may ensue. Current treatment for postpartum coagulopathy is non-specific and primarily consists of replacing blood components. If specific causes or markers of abnormal coagulation can be identified in women at risk, then it might be possible to target (with specific medications) specific abnormalities early in the process and decrease hemorrhage and the need for blood transfusions.


from HERE

The normal female body prepares for birth with coagulation being upregulated a little, if they don't they can get post partum hemmorhage a common cause of post partum death. (post partum means after birth)

The paragraph above comments on a couple of kinds of coagulation abnormalities. ecessive and hypo(meaning "less") active

Anyone see a connection there :wink:
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby chrishasms » Fri Jun 12, 2009 7:27 am

123
Last edited by chrishasms on Sun Dec 06, 2009 11:53 am, edited 1 time in total.
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Postby mrhodes40 » Fri Jun 12, 2009 7:57 am

the irony is, medical researchers could never explain why smoking was so bad for MS.....what does a cigarette have to do with autoimmunity? They said it showed "risky behavior" and smokers were more promiscuous and had more viral exposure (EBV, HPV) WTF????


It's true I read that as well........... HAH! :evil:
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Loobie » Fri Jun 12, 2009 8:32 am

The energy on this thread is palpable. I just love it.
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Postby Sharon » Fri Jun 12, 2009 9:38 am

I was one of them, there smokers. I stopped when I was in my mid-thirties but that was after what I now think was an MS exacerbation. Glad that I stopped when I did - thank goodness for young children who were coughing in the the back seat of the car while I was puffing on a cigarette. It was because of the kids that I stopped---and oh, also because a pack of cigarettes was going to 90 cents and I didn't think we could afford it (my husband also smoked)...Times have changed --how much does a pack cost today $3, $4?

Sharon
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