Questions, points,... (but I'm a believer!)

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

Questions, points,... (but I'm a believer!)

Postby jay123 » Mon Oct 05, 2009 5:39 am

Let me begin by saying I truly believe this is a great step for us, I think it has benefits, I have my info in to Dr. Dake waiting for a call so I can be scheduled and even without 'scientific' proof of it helping MS if anybody without MS has this problem it should be fixed.

A few 'devils advocate' questions just so I can hear what everybody thinks (and maybe everybody can use this thread for their arguments and leave the status threads alone!);

- If this is vascular, why is it a predominately far northern (or far southern) latitude disease?

- How does the Faroe Island outbreak factor in?

- Does this have anything to do with the difference in PP MS and the others?

- Will this discovery help the re-mylentation efforts, or just help the other symptoms such as heat intolerance and fatigue?

- If this can stop the progression, will we still require something to get the existing 'bad stuff' out of our systems, such as Campath or Revimmune?
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Postby jay123 » Mon Oct 05, 2009 5:44 am

OK, my thoughts -

-This will help stop the progression of the disease.
-I will debate the risks/rewards of a drug like Campath next. (I am on Tysabri and I think I have gone downhill in the last 14 months).
-Sooner or later a re-mylentation process will come around, I'm betting with stem cells.
-For now I am hoping to try the new 4-ap drug to help the nerves.

and I don't have a clue why it is a far northern/southern latitude disease.
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Postby LR1234 » Mon Oct 05, 2009 5:50 am

I am also " a believer" and my big question is why do some people get better with antibiotics and/or diet. I have read so many books on people like Terry Wahls, and Anne Sawyer, Judy Bacaharat and there is Sarah (onTIMS) that seem to overcome MS with other treatments.
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Postby mrhodes40 » Mon Oct 05, 2009 6:19 am

These same questions have come up over and over. The best we can do is speculate.

I want to point out that the latitude issue impacts vitamin D status, and how exactly vitamin D interacts with the endothelium (blood vessel lining) is not defined in the face of these stenoses. There will be papers on this--many papers. We can speculate with good reason that the endothelium is vulnerable with low vitamin D and I know that some genes are up regulated and others down regulated according to D status so it may be true that the latitude answer lies there.

Autoimmunity is NOT well explained by latitude either.

The Faroe Islands is a mystery. It is a mystery from the autoimmune model as well. It may be that germs in our environemnt play a role in all of this: for example CPn is a vascular germ, it livesin endothelium, is it possible it causes remnants of congenital tissue to thicken and grow when irritates certain areas? I do not know, but it could be something of that nature.

And of course I offer also that germs may be a co factor here. I took antibioics for 3+ years with no real benefit in terms of MS though I felt more energetic and clear headed. But I needed my MS to stop progressing, it did not. I hope that the various doctors involved will work with one another on this to find out if CPn, EBV HHV6 are merely there after the fact because of the poor circulation or if (CPN in particular) they play a role in the stenosis themselves in SOME people. Note: mine were not possibly CPn caused by any possibility.

Decades of things we tentatively thought we had a partial answer to (latitude has to do with Vit D and it is immune system active) will now need to be re evaluated in terms of stenosis.

In Bologna one of the doctors commented there will be 20,000 papers on this in the coming years.......... many will have to do with revisiting such issues
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 mrhodes40 » Mon Oct 05, 2009 6:27 am

As for remyelination the brain will have to do that. In some people it will work pretty well in others not so much depending on how long they have been sick and the level of MS damage involved.

That having been said, the improvement in circulation will allow the brain to function better including things like myelination because it is getting oxygen and not getting immune activity that results in oxidative damage.

But if you've had MS for a long time it is unreasonable to think you'll go back to "normal"; we'll always be like a person who had a stroke or something--coping with brain damage leftover from the attacks we had before.

In a few years we may be anachronistic reminders of "when there used to be MS" like the odd polio victim you still meet today decades after the disease is eradicated.
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 » Mon Oct 05, 2009 7:24 am

123
Last edited by chrishasms on Sat Dec 05, 2009 5:08 pm, edited 1 time in total.
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Postby LR1234 » Mon Oct 05, 2009 7:30 am

I know that tightness in the calves feeling.
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Postby Loobie » Mon Oct 05, 2009 7:51 am

Me too, it sucks canal water.
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Postby CureIous » Mon Oct 05, 2009 8:27 am

Loobie wrote:Me too, it sucks canal water.


Yuck. Never tried canal water, take your word for it!

I'm a firm believer that re-establishing proper circulation and putting a stop to reflux will help the body to do it's proper cleanup and also remyelinate. I do hope that someday we will have SWI standard issue, and get some before and afters, but, see no reason they can't start SWI studies now even on us stent-o-teers, get a baseline, then check at yearly intervals. Wouldn't it be great to see 2, 3, 4 years of MRI's with no new lesions, backed up by ever-decreasing iron loads shown on the SWI?

Pulls head back out of clouds.

:)
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby jay123 » Mon Oct 05, 2009 8:43 am

By the way, are the stents used non-magnetic for future mri's?
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Postby CureIous » Mon Oct 05, 2009 8:47 am

jay123 wrote:By the way, are the stents used non-magnetic for future mri's?


Non-magnetic nickle. Should light up like a christmas tree though on the mri due to differentials. Can't wait to post up my before/after shots when I get back next week from the follow up. Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Shetland and Orkney Islands Thought

Postby VailKin » Mon Oct 05, 2009 10:15 am

bc ms is more likely to develop in smokers than non-smokers (per the Boston Nurses Study), I've wondered if the soldiers stationed on the Islands prior to the MS cluster brought their smoking habit with them and left MS as a legacy...
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Postby magoo » Mon Oct 05, 2009 12:26 pm

jay123 wrote:By the way, are the stents used non-magnetic for future mri's?


Is there any trouble going through metal detectors???
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Re: Shetland and Orkney Islands Thought

Postby zap » Mon Oct 05, 2009 1:10 pm

VailKin wrote:bc ms is more likely to develop in smokers than non-smokers (per the Boston Nurses Study), I've wondered if the soldiers stationed on the Islands prior to the MS cluster brought their smoking habit with them and left MS as a legacy...


That's an interesting theory ... thanks!
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Postby Sharon » Mon Oct 05, 2009 1:54 pm

Is there any trouble going through metal detectors???


No, there is not a problem.
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