the 'Random CCSVI Notions' thread

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

Postby whyRwehere » Fri Sep 03, 2010 1:14 pm

Oh, I remember this thread the first time around...glad to see it again, because I had a random thought more to do with MS than ccsvi. It has to do with this article, which talks about MS getting worse in hot seasons. What if the incidence of MS in the North is not only caused by a lack of sunlight, but rather people brought up in sunnier climes develop better coping mechanisms (more collateral veins say), which northerners don't. Just a random thought not science....
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Re: Fibro and CCSVI

Postby Trish317 » Fri Sep 03, 2010 6:37 pm

Gman wrote:I have all the classic symptoms of CCSVI and suffer from Fibromyalgia. My mother has MS.

I was recently tested for CCSVI and tested positive for 3 out of 5 parameters. So, I have it.

Who knows how many "neurological conditions" are to blame for this irregularity?

Now, I'm on the road to find the best liberation procedure out there. I will keep everyone posted.


I was diagnosed with Fibromyalgia over 15 years ago. It was almost impossible back then to get my doctor to admit that it was an actual condition. A few years later I moved here to Rhode Island, found a new doctor, and she immediately accepted that I did have it. I've taken low doses of anti-depressants but it's never helped much. Thankfully, it's not too bad. But, not getting enough restorative sleep will cause me to be in alot of pain.

Someone just told me that there are doctors who believe there's a Fibromyalgia/CFS and CCSVI connection.

Please do keep us posted on how things go for you.

Best wishes!
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Regarding hair loss and MS

Postby Vance » Sat May 07, 2011 6:10 pm

One possibility is that extensive MRI or MRV tests might give you enough radiation to cause hair falling out (I don't know how long it lasts). I read in one blog that MRI tests outside the US (and maybe Canada) are not strict on the length of time and maybe defective machines or excess time limits might cause the hair loss. Just a thought...
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Postby Shannon » Sat May 07, 2011 7:11 pm

It's great to see this thread, once again! I actually thought it was new until I noticed that I had posted to it. Well, that's MS brain for ya. 8) Ugh...but to be reminded of my last bad episode! Thankfully, that was awhile ago now and I haven't had another, yet. Just the usual crazy symptoms...but no loss of legs, etc. like during an episode. I like the theory about those growing up in warmer climates developing differently to accommodate CCSVI better. How many people who do not have MS have been tested? Did many of them have CCSVI without symptoms? It does make sense that maybe the collaterals just didn't develop as extensively in colder climates. maybe due to the cold itself, or the vitamin deficiency from lack of sun. On another note, I have been thinking about an issue I had once, in which i thought that my high cholesterol had finally caught up with me. My left arm kept getting itchy spots, with no visible reason for them. They followed a pattern along my arm, specific spots, and seemed to follow along a vein leading all the way down to my thumb. This progressed eventually into severe itchiness all throughout my arm and shoulder, which was relentless. Scratching did nothing to touch it, and only an antihistamine prescribed by the neuro finally did away with it. It got worse at night, when my body was more worn down. Makes me think now that it actually was a vascular issue after all.
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Postby 1eye » Sat May 07, 2011 8:11 pm

I stopped smoking long before 'MS'. Only thing I can figure is maybe I'll feel better if I start up again. Same with pot. Same with LSD. My hair is still thicker than my brother, who went bald at 30. I started losing it on mitoxantrone, so probably there's nothing to that baldness theory. If I had kept up the mitox till all my hair fell out I'd probably have been cured. Especially if my ears had fallen off too.

Also, I could walk before I met Dr. Freedman. Maybe if I could find some kind of drug that would induce amnesia and I could forget all those times I stuck needles in my leg or my arm or my butt or my stomach and woke up feeling like vomit warmed over and stayed that way until later that week or the next day and forget the foolishness I'd wasted all those years falling for, maybe I could remember how to walk.

Maybe I could remember what my kids used to be like when they were little.

The brain has limited capacity. Perhaps if I were to have some ECT treatments and wipe out some of the useless crap I've been fed over the past 15 years about auto immunity and 'MS' and myelin and all that malarkey, I might have room left to remember some of my guitar playing, or math, or communication theory, or electronics.
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Postby Music » Sat May 07, 2011 8:50 pm

MS/CCSVI is very complex and affects every body differently and at varying ages.......so many questions. I know of two people born and raised where it's hot everyday and then they've moved here and developed MS???? A friend of mine from the Phillipines came to Canada in her thirties and now 10 years later has to take Vitamin D as her level is very low. Are we born with the MS gene or does it develop later on from other factors?? Hmmmm..........
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Postby CaptBoo » Sat May 07, 2011 8:57 pm

I've never lived or even visited for more than a week or two anywhere farther north than central Texas and if fact lived many years in the tropics of Africa, Indonesia and the Caribbean. My mother was raised on a ranch in west Texas and birthed me in south Louisiana. I know there is a body of work blaming northern latitudes and lack of Vit D, but I don't buy it.
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Postby Cece » Sat May 07, 2011 10:56 pm

CaptBoo wrote:I've never lived or even visited for more than a week or two anywhere farther north than central Texas and if fact lived many years in the tropics of Africa, Indonesia and the Caribbean. My mother was raised on a ranch in west Texas and birthed me in south Louisiana. I know there is a body of work blaming northern latitudes and lack of Vit D, but I don't buy it.

But it could always be that you'd have had much more severe MS if you were up here in the northern latitudes and that living where you did spared you some of that.

I accept the research on northern latitudes. It might be easier when it fits with my personal experience (raised in a northern latitude, stuck wtih MS).

It sounds like you've had an adventurous life, CaptBoo. Last year I saw Africa, from a distance (it was a dim mountain, seen from across the Mediterranean); I am marking it off my bucket list, even if I didn't quite get close enough to see lions. :)
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Postby Asher » Sun May 08, 2011 7:34 am

Forer effect
The Forer effect (also called the Barnum Effect after P.T. Barnum's observation that "we've got something for everyone") is the observation that individuals will give high accuracy ratings to descriptions of their personality that supposedly are tailored specifically for them, but are in fact vague and general enough to apply to a wide range of people. This effect can provide a partial explanation for the widespread acceptance of some beliefs and practices, such as astrology, fortune telling, and some types of personality tests.
A related and more generic phenomenon effect is that of subjective validation.[1] Subjective validation occurs when two unrelated or even random events are perceived to be related because a belief, expectancy, or hypothesis demands a relationship. Thus people seek a correspondence between their perception of their personality and the contents of a horoscope.
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Postby 1eye » Sun May 08, 2011 7:49 am

Two random events. Yes, I've seen postings by a few of those around here. My hypothesis is that random electrons on the Internet will combine eventually, like so many monkeys with typewriters, to produce a scientific explanation for all otherwise unexplained phenomena. I predict it has already happened in this very topic.
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Postby MegansMom » Tue May 10, 2011 6:03 am

My Theory on Location, Climate and incidence of MS/CCSVI in more northern regions


I believe that warm climates( closer to the equator ) keep vasodilatation as a regular signaled occurrence. In warm regions being warm and sweating to cool the body After the veins dilate is frequent. The endothelium gets signaled to relax and expand. Even if you were born with CCSVI it might not get worse over time because the signals ( there are several chemical ways this occurs) sent to the vessels is to "vasodilate". This occurs regularly, especially as a child, when you spend long periods of time outdoors.

On the other hand those born with CCSVI "up north" are regularly faced with vasoconstriction signals to preserve body heat. So these signals of vasoconstriction overtime may cause changes in the endothelial walls, more
fibrously and hypertrophy. One of these signalers is Endothelin1. It's found in hundreds of times higher than normal amounts in pwMS. Also Endothelin1
is triggered by hypoxia, turbulent flow( disturbed sheer stress) and hypoglycemia - and CCSVI can create all of these in the cerebral
environment. How many if you that grew up in northern climates remember playing outdoors in the snow until you feet and hands were numb and pale
blue?
These conditions over years may '" signal" the body to produce certain chemicals that can possibly make vessel anomalies change over time, which would increase the degree of hypoxia and hypoprefusion.
The CCSVI getting worse over time , if Endothelin 1 or other chemical trigger
makes it worse could contribute to the higher incidence in the north.

I believe the chemical signalers that control vasoconstriction and vasodilatation may influence development of the vessels over time. The anomaly gets worse over time due to these.

More north more vasoconstriction
More south more vasodilatation.

Combine this with the anomaly being in certain families too and you can " explain" them.


We have just begun to study the vessel signaling chemicals, EDRF, NO, Endothelin, etc. In fact they were just recently discovered within the past 10+ years.
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My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby 1eye » Tue May 10, 2011 6:17 am

Interesting. It's actually the analog of what you get from the vitamin-D/equatorial theory. Only according to yours it may be not just sunshine. But it follows the same rule - the farther from the equator, the less sun, the less the thermometer reads on average, and from what you say, the more we vasoconstrict,, to conserve our internal temperature. May even be related to our production of vitamin D wouldn't you think?

On a related note (a different type of heat) would less equatorial climes produce less erectile dysfunction due to more vasodilation ability? One should be able to verify this. Sounds like a project.
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Postby Asher » Tue May 10, 2011 3:26 pm

This forum is rapidly becoming 'the best show in town' :lol:
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Postby 1eye » Tue May 10, 2011 5:55 pm

This forum is rapidly becoming 'the best show in town'
Oh, will you please rapidly go and perform a random anatomical impossibility rapidly upon yourself?
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Postby Asher » Wed May 11, 2011 12:21 am

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.
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