the 'Random CCSVI Notions' thread

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

Postby 1eye » Wed May 11, 2011 7:11 am

Asher wrote:
MS' is over - if you want it
Patients sans/without patience


I never paused to notice this. Don't worry, life will teach you patience.


In a hurry, were we? Don't worry, life will teach you to be a patient.
"Try - Just A Little Bit Harder" - Janis Joplin
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'MS' is over - if you want it
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Postby zinamaria » Wed May 11, 2011 8:52 pm

1eye, you really make me smile. How'd you get so smart, poetic and downright funny???

Now, let's see, where were we....
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Relief using feet?

Postby 1eye » Tue May 17, 2011 8:22 pm

OK come on all you trolls and lurkers, here I go inviting some more ridicule. A while back I started a thread on a vibrating platform that my brother told me about. I never did try it.

I have also been heard whining on here about what I think is reflux: characterized by massive myoclonic jerks, spasms, great heat sensitivity especially in my legs, and an overall spastic feeling that sweeps my whole body. It can keep me awake for hours if it happens in bed.

I have recently found I seem to get relief from this using a portable, battery-powered three-legged vibrating device that I rub all over my lower legs and feet from about the ankles down. Is that weird or what? I have also been using it on my neck, hoping it somehow will unscientifically convince any clots that might be there to please go away. I don't know if they are listening. Any suggestions? Beethoven, perhaps?
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Cece » Wed May 18, 2011 8:21 am

1eye, do you think a d-dimer blood test for clotting would be at all useful? Maybe it would be enough to go on to then get a local vascular specialist to give you a look? If it is clotting, you might be put on coumadin, this has been done for other Canadians and has been covered. Is the possible clotting in a stent or in an unstented area? This is based on your results from Barrie that you received three months afterwards, it might be good to find out where you're at now.

Canadians are supposed to be covered for complications and what you're worried about (clotting) is a potential complication.

As for the vibrating, if it works on your legs, it seems like a good idea. All the biking you are doing would be good for blood flow which could be helpful for any issues going on in your neck. MegansMom suggested exercising daily, she had a good rationale for it.

For something random: Tulips! Are the brightest things ever. Who knew.
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Postby 1eye » Wed May 18, 2011 9:04 am

I might ask my GP for that test. Will it detect an old clot? I was tested in Feb. but treated in August, so 6 months passed. It's now more like 9. I got no stents in Albany. Just as likely to be thick gristle of some kind, I expect.

Don't come to Ottawa at this time of year. You'll be blinded. They made the mistake of sheltering some Dutch royalty or other during World War Two and now we have more tulips than you can see from a balloon. There is a thing at this time of year called the Tulip Festival, when they give token funding to the arts, sing and dance, and a good time is had by many.

My brother and Dr. Duncan are to be sworn in on Friday at 2, center block (with all the other elected MPs I assume).
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Cece » Wed May 18, 2011 12:17 pm

I would really enjoy a Tulip festival.

I think the d-dimer test catches active clotting only. It doesn't specify where in the body the clotting might be happening. And without a baseline test pre-procedure it's hard to know what to compare the d-dimer results to afterwards. Not perfect and maybe not much of a role for it in CCSVI if an IR is available to do a doppler ultrasound compressibility check...but that should've been done in your Barrie follow-up. They didn't mention any clotting, could it be simple restenosis?
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Postby 1eye » Wed May 18, 2011 5:28 pm

All I have is what you see on my web link. I assume it was part of what was done, but it's just a simple + or - with the word "compressible". Phone call time I guess.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Cece » Wed May 18, 2011 6:59 pm

Compressibility is relevant to clotting!
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Postby zap » Sun May 22, 2011 12:26 pm

Perhaps we are infected with a pathogen that causes the veins to stenose (and restenose), in order to provide itself with a more favorable environment in which to flourish in our brains.

It would hardly be one of the more amazing ways in which parasitic organisms of all kinds are known to modify host physiology (to say nothing of behavior) in order to benefit themselves. And it's not uncommon ...
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Postby 1eye » Sun May 22, 2011 1:22 pm

It sounds intriguing, but I have had most every test, invasive, surgical, and not, that I have ever heard of, and nobody has spotted anything. No electron microscopy that I know of, though, but one ophthalmologist, looking with an optical one, after many oral and topical antibiotics, said, "I can't see anything alive in there."

After some of the chemo I've had I'd be surprised if a self-respecting pathogen would go near me. It would solve one of the mysteries of my sickness, though: one day I didn't have it, next day I did. Because I always woke up with new symptoms, I blame sleep. I'm trying to avoid it. 8)

Everybody's got a story, right? Well, I talked to a guy once who said he hadn't slept since some time in World War Two. He said he lay down sometimes and even closed his eyes, but he was never asleep, and nobody he had found had ever waked him up. Maybe that's what we need to do. Evolve our way out of this. Seems like a political nightmare anyway... 8O
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Shannon » Sun May 22, 2011 3:54 pm

I was just reading a study about research linking ulcer bacteria to Parkinson's. http://www.sciencedaily.com/releases/20 ... 141547.htm
I have been treated in the past for ulcer bacteria, and am now wondering if it could also be a trigger situation for MS? The timing of when I would have gotten it matches with onset. I got the stomach bacteria from my husband, and developed MS shortly after we were married. 8O It is called helicobacter pylori, and is the common stomach lining bacteria causing ulcers. I had a bleeding ulcer from overuse of Motrin during therapy with Avonex, and when they biopsy the stomach lining, they test for it. My husband was also treated. It gets passed, in the modern world, mainly from one person kissing another, as it has also been found in tooth enamel. If you've ever had really bad gas and really bad breath, then I would suspect that you could be carrying it. After treatment with a combination of antibiotics, we both lost both of those maladies! I even tease my husband now that his farts don't stink anymore and he acts disappointed. :roll: It is a very tricky bacteria, because it is the only one known to survive the acidic environment of the stomach. Most cannot, but it does so by making up house within the protective lining of the stomach to evade acidity issues. As soon as something irritates the lining of the stomach, it begins to eat away at it, causing the ulcer. Little bastards! :twisted:
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cross-posted

Postby 1eye » Mon May 30, 2011 1:10 pm

1eye wrote:Not sure where I am going, but I ain't lost...

Has anybody heard of epidemiological studies relating 'MS' incidence to altitude (remember many populations live at both predominantly high and predominantly low alltitudes)? Airplanes have not been around that long: maybe what the army brought to the Faroes in WW2 was flight?


Or maybe Daylight Savings Time?
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: cross-posted

Postby Cece » Mon May 30, 2011 2:06 pm

1eye wrote:
1eye wrote:Not sure where I am going, but I ain't lost...

Has anybody heard of epidemiological studies relating 'MS' incidence to altitude (remember many populations live at both predominantly high and predominantly low alltitudes)? Airplanes have not been around that long: maybe what the army brought to the Faroes in WW2 was flight?


Or maybe Daylight Savings Time?

Colorado has both high altitude and high incidence of MS. Not sure of the exact statistics.

Tropical climates have lower MS. In tropical climates, is the population likely to be living at sea-level?
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