Why does treatment help so fast ?

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

Postby eric593 » Wed Dec 15, 2010 5:42 am

Malden wrote:Like dr. Sclafani said above, those warming effects are from contrast dye and from sympathetic nervous in origin. Not from improved circulation as a result from resolving jugular vein blood flow.


No, Dr. Sclafani says that effects of contrast only last a few minutes (not hours, days, etc).
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Postby malden » Wed Dec 15, 2010 6:09 am

eric593 wrote:
Malden wrote:Like dr. Sclafani said above, those warming effects are from contrast dye and from sympathetic nervous in origin. Not from improved circulation as a result from resolving jugular vein blood flow.


No, Dr. Sclafani says that effects of contrast only last a few minutes (not hours, days, etc).


What is "No, " in my post? I did not mention any time measurement - neither minutes or hours or days. Read more carefully next time.
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Postby eric593 » Wed Dec 15, 2010 8:25 am

Malden wrote:
eric593 wrote:
Malden wrote:Like dr. Sclafani said above, those warming effects are from contrast dye and from sympathetic nervous in origin. Not from improved circulation as a result from resolving jugular vein blood flow.


No, Dr. Sclafani says that effects of contrast only last a few minutes (not hours, days, etc).


What is "No, " in my post? I did not mention any time measurement - neither minutes or hours or days. Read more carefully next time.


You suggest in your post that "onesickrace's" experience was what Dr. Sclafani spoke about, a reaction to contrast dye. But that isn't the case, since Dr. Sclafani suggests a contrast effect only lasts for minutes whereas "onesickrace's" improvements began well after the first few minutes of contrast dye being injected. So, contrary to what you state, the contrast dye could not be the cause of "onesickrace's" improvements based on Dr. Sclafani's knowledge of how long a contrast effect lasts, not long enough to be connected to "onesickrace's" improvements which began and remained after the procedure had ended, beyond the timeline Dr. Sclafani notes could be connected to the contrast dye.

But I think that you read and understood my comments just fine the first time without the elaboration, you just wanted to add the barb in about me improving my reading. You only chose to DISREGARD the timeline that Dr. Sclafani limited a contrast reaction to when you responded, possibly to try to garner support for your position that was simply not contained in Dr. Sclafani's statement.
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Postby bruce123 » Wed Dec 15, 2010 8:44 am

It seems thing are getting a bit heated!!

I started this thread because I didn't know if there was a predominant theory regarding the sudden improvements that some people experience. It seems that there isn't a predominant theory but I am still interested in anyone's theory.

I not interesting in arguing. I thought we were all in this together.

Bruce.
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Postby onesickrace » Wed Dec 15, 2010 9:13 am

malden,

on numerous occasions, ive had the contrast injected during imaging.. this feeling was after they pulled the wire out of my vein and no imaging was done anytime after the procedure. also, i know that everytime ive been given the contrast, i can taste it... and this time i couldnt. thirdly, it was a completely different sensation than just the warming that comes from contrast. it was almost a tingly sort of warm sensation starting at both shoulders and taking about 2 minutes to get to my finger tips. i even wondered how hot it would get.

just to throw it out there, i had the procedure done on my azygous vein and nt my jugulars, so maybe this has a different effect than if it were my jugulars...
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Postby malden » Wed Dec 15, 2010 3:03 pm

onesickrace wrote:on numerous occasions, ive had the contrast injected during imaging.. this feeling was after they pulled the wire out of my vein and no imaging was done anytime after the procedure. also, i know that everytime ive been given the contrast, i can taste it... and this time i couldnt. thirdly, it was a completely different sensation than just the warming that comes from contrast. it was almost a tingly sort of warm sensation starting at both shoulders and taking about 2 minutes to get to my finger tips. i even wondered how hot it would get.

just to throw it out there, i had the procedure done on my azygous vein and nt my jugulars, so maybe this has a different effect than if it were my jugulars...


Thank you onesickrace for explaining your experience. If this warming is not comming from contrast, then it must be, as dr. Sclafani wrote, from sympathetic nervous in origin.
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Postby eve » Thu Dec 16, 2010 12:37 am

Well if this is the argument, they could rule that out very quickly by doing a blind study - if all that is needed is run some contrast dye or a placebo through some MS sufferers veins. Could be clear in a few weeks - if they want to.
dx 2002,RRMS,  suspected begin of MS 1978 (age 10)
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Sticking with basic science

Postby MarkW » Sat Dec 18, 2010 6:47 am

Lets repeat the basic roles of CSF:
- provide oxygen
- provide nutrients
- remove waste (CO2 is a waste product)
Logically any early and on-going improvement after de-stenosis is most likely to be linked to CSF flow. It will take years of research to establish the exact process.

My educated guess is that removal of waste products by opening of veins plays a significant role. If waste is not removed then the brain slows down in a negative feedback loop. Maybe, opening veins removes waste products and permits the brain to work at greater speed, giving the quick recovery in fatigue and brain fog that patients have reported as clincial experiences.

The role of hormones (proper androgen signaling) mentioned by pairOdime is interesting. I agree it could be a medium term (days/weeks) impact rather the short term (hours/days). It does make research more complex and time consuming.

De-stenosis is unlikely to be a simple single effect (our bodies are more complicated that this). It will take the researchers a long time to explain what is happening in CCSVI. Also please remember that if one of the factors is shown to have a role that does not mean the others are excluded. Explaining CCSVI is very complex, please do not try to over simplify it.

Lets remember this simple concept:
CCSVI syndrome has stenosed veins as a symptom. Any extracranial restrictions may be safely de-restricted (de-stenosed) using balloon venoplasty.

To de-stenose or not to de-stenose, that is the question for pwMS. Whether you will take the risk of balloons.............

Kind regards,

MarkW

PS Malden (Colin Rose) is a naysayer on CCSVI. He says he wants proof/trials. This is designed to mislead as CCSVI is syndrome in which the diagnosed symptom is treated, not the etiology of MS explained.
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Interesting info

Postby MarkW » Sat Dec 18, 2010 7:17 am

Cece posted (in another thread):
Cheer also posted (possibly in a different thread) that the doctors doing perfusion/fMRI work (which must be Dr. Hubbard?) are finding that the ratio of blood flow in normal brains compared to MS brains is 2 to 1, quite a dramatic difference.

I thought the perfusion work was being done by Mark Haacke's group. If they find that de-stenosis increases blood flow (better CSF flow) by two-fold then de-stenosis becomes mainstream for pwMS. Research and argument over MS etiology is side stepped.

Does anyone have any details ?

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby AMcG » Sat Dec 18, 2010 9:26 am

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Re: Interesting info

Postby malden » Sat Dec 18, 2010 1:55 pm

MarkW wrote:Cece posted (in another thread):
Cheer also posted (possibly in a different thread) that the doctors doing perfusion/fMRI work (which must be Dr. Hubbard?) are finding that the ratio of blood flow in normal brains compared to MS brains is 2 to 1, quite a dramatic difference.

I thought the perfusion work was being done by Mark Haacke's group. If they find that de-stenosis increases blood flow (better CSF flow) by two-fold then de-stenosis becomes mainstream for pwMS. Research and argument over MS etiology is side stepped.

Does anyone have any details ?

MarkW


There is no details at all.

"...ratio of blood flow in normal brains compared to MS brains is 2 to 1..."

is totaly false and fictitious claim, not proven at all.
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Re: Interesting info

Postby Cece » Sat Dec 18, 2010 2:22 pm

MarkW wrote:I thought the perfusion work was being done by Mark Haacke's group. If they find that de-stenosis increases blood flow (better CSF flow) by two-fold then de-stenosis becomes mainstream for pwMS. Research and argument over MS etiology is side stepped.

Does anyone have any details ?

MarkW

It wasn't said which group it was, I was only guessing Dr. Hubbard because of his work on fMRIs and pre- / post- procedure oxygenation.

Would perfusion data alone really be compelling enough to get this mainstream?
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Postby Leonard » Sun Dec 19, 2010 8:02 am

Cece wrote:There has been much talk about CCSVI's effect on oxygenation of the brain, I always want to pipe up and say don't forget about the glucose needs of the brain too. That too is likely depleted when outflow is blocked.

Some previous thinking on fast improvements was that it could be placebo, vascular in nature, or autonomic nervous system (?). Also if fatigue is lifted, then that can account for some improvement too possibly, such as being able to walk farther than before.

A big difference is if the neurons are "merely" damaged or undernourished, they can be restored, but if the neurons are gone, then they can't be brought back.


this matches my own experience. I can go for about half an hour, and then the legs just stop. then I have to sit down and rest a bit, eat an apple or drink a glass of coke. after, I can go again perhaps for 15 or 20 mins. taking a bit of sugar makes the hell of a difference. this has been the case many years now.

as you say, the implications of this could be BIG!! and indeed would seem to point at another mechanism than neuron death that explains the effect. a low glucose level because of slow blood flow would seem a plausible explanation. whow Cece, you have just given me an extra dose of hope..
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Postby Cece » Sun Dec 19, 2010 9:46 am

Leonard wrote:this matches my own experience. I can go for about half an hour, and then the legs just stop. then I have to sit down and rest a bit, eat an apple or drink a glass of coke. after, I can go again perhaps for 15 or 20 mins. taking a bit of sugar makes the hell of a difference. this has been the case many years now.

as you say, the implications of this could be BIG!! and indeed would seem to point at another mechanism than neuron death that explains the effect. a low glucose level because of slow blood flow would seem a plausible explanation. whow Cece, you have just given me an extra dose of hope..

I'm like that too, Leonard, it's why I focus on the glucose side of CCSVI! It might tie in to heat intolerance too; glucose levels in the blood vary more dramatically when it's hot outside, it's something that diabetics have to take into account in the summer. I am also trying now to have some light protein before I go to bed, since sleep is in particular a "danger" time with poor blood flow. If you read Cheer's research on REM sleep, it tied into this because REM sleep takes a lot of glucose and in glucose-deprived brains, it could be why some pwMS report not dreaming and why some liberatis report a return of dreams.
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Postby Leonard » Sun Dec 19, 2010 10:08 am

Cece wrote:
Leonard wrote:this matches my own experience. I can go for about half an hour, and then the legs just stop. then I have to sit down and rest a bit, eat an apple or drink a glass of coke. after, I can go again perhaps for 15 or 20 mins. taking a bit of sugar makes the hell of a difference. this has been the case many years now.

as you say, the implications of this could be BIG!! and indeed would seem to point at another mechanism than neuron death that explains the effect. a low glucose level because of slow blood flow would seem a plausible explanation. whow Cece, you have just given me an extra dose of hope..

I'm like that too, Leonard, it's why I focus on the glucose side of CCSVI! It might tie in to heat intolerance too; glucose levels in the blood vary more dramatically when it's hot outside, it's something that diabetics have to take into account in the summer. I am also trying now to have some light protein before I go to bed, since sleep is in particular a "danger" time with poor blood flow. If you read Cheer's research on REM sleep, it tied into this because REM sleep takes a lot of glucose and in glucose-deprived brains, it could be why some pwMS report not dreaming and why some liberatis report a return of dreams.


Cece, thank you! I can confirm this. My sleep was terrible, lots of headaches, night spasms, many times out of bed to urinate, most of the time half awake. Until I got liberated. And indeed, I started sleeping and dreaming again, I mean really dreaming as if my young years had come back. Until things restenosed ... and restenosed..
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