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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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Daisy3
PostPosted: Mon Sep 06, 2010 10:29 am 
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I was looking for more info on how the Quwait dealt with their progressive patients etc and found out that they only had 90%RRMS and 10% SPMS patients.
Is this true?! Did they exclude all the patients with progressive ms?
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ppicklee
 Post subject: PPMS ?
PostPosted: Mon Sep 06, 2010 3:56 pm 
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I'm really interested in this too. Does anyone have any info? Thanks!
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beerduff
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PostPosted: Mon Sep 06, 2010 7:48 pm 
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Location: Calgary AB
This was the original criteria.
Not sure if it has changed from March 2010.


INCLUSION CRITIRA:

Patient: with proven MS, all types (RRMS, SPMS, PPMS) with positive Doppler and MRV (> 50% stenosis)

Age: 18 and above



Sex: both males and females

Nationality: Kuwaiti

Venue: Mubarak Al Kabeer Hospital (other public hospitals will refer to Mubarak Hospital)

EXCLUSION CRITIRA:
Sever MS patient with EDSS score more than 6.5

Exclude those in long remission >10 years.
In exclusion sever cognitive impairment

MS patient with recent relapse or on steroids (within 3 months)

MS patient with recent change or added medication (within 3 months)

MS patient with evidence of brain atrophy on MRI

Drug abuse or alcohol,vascular malformation or head trauma

Patient with other sever co-morbid conditions ( i.e. heart or lung disease)

Patients younger than 18 years

Pregnant females or (or will be pregnant during study)

Patient with contrast allergies

Patient with abnormal mental status

Patient with normal Doppler and MRV testing(< 50% stenosis)

Patients in whom the diagnosis of MS is not confirmed
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Daisy3
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PostPosted: Tue Sep 07, 2010 3:02 am 
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Hmmm...

well, I guess the cat can come out of the bag. I emailed Dr Tariq and asked him that question and was told that only RRMS and SPMS people took part in the study.

I find that slightly hard to swallow,did they really have no progressive patients or did they just choose to exclude them?

Oh well, that would have been really good data for progressive patients. Shame
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jgkarob
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PostPosted: Tue Sep 07, 2010 3:10 am 
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Location: O Saviñao, Lugo, Galicia.
What I'm finding difficult to understand is that MS should be as rare as hen's teeth in Kuwait.
It may be that people aren't getting enough vitamin D3 through staying out of the sun, but statistically, MS shouldn't be there.

It is extremely rare in equatorial countries.
It's also less common in countries where people are used to spending a great deal of time out of doors.

Having lived in south-east Asia for nearly ten years, where I was diagnosed, I was my neuro's only MS patient. There was a woman in the Phillipines whom I encountered on Jooly's joint, but I was very much on my own.

This Kuwait trial is a bit of a mystery - does anyone know why there is an MS 'blip'?
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Algis
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PostPosted: Tue Sep 07, 2010 5:01 am 
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At least there is ~ 12 cases in Taiwan; as we see the doctor the same day; Tuesday morning...

But it's only 1 consultation in 1 day every 3 months in 1 hospital in 1 city...

I- for one - certainly never got enough sunshine.

But I cant relate to anybody else Cheers!!
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Daisy3
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PostPosted: Tue Sep 07, 2010 5:21 am 
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I take it back-been told that there are some patients with PPMS that Dr Taris sinan has treated.

Need to get hold of that paper and have a read through myself...any ideas where i can get it?
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Rokkit
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PostPosted: Tue Sep 07, 2010 7:16 am 
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I thought originally we were told Kuwait was treating all citizens with MS.
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Daisy3
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PostPosted: Tue Sep 07, 2010 7:33 am 
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That's right- I think there was some misunderstanding between when I asked the question.

I really would like a look at the paper to see how many people with progressive ms took part in the study as any data is useful to me on that front.


All the people in Kuwait (did i spell it wrong in my title?) with ms were offered the treatment, but there was also an exclusion criterion. I have been told that PPMS patients were not excluded. I would have thought that there would have been a sizeable group in 6000 participants who would have ppms. Oh well....lets see..
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jgkarob
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PostPosted: Tue Sep 07, 2010 8:23 am 
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Location: O Saviñao, Lugo, Galicia.
Growing up in Yorkshire, I think I did get out a lot as this was the 1960s and babies were out in the sunshine as much as possible.

Here in northwest Spain, I asked my new neuro how many MS patients he has and he has 9. He's the only neuro in a large area.
Must be the sunshine then. It's an outdoor life.

Perhaps it's just so hot that people don't get their D3 (women covering up, staying indoors) in Kuwait?
So where does the D3 shortage tie in with CCSVI?
It's all so complicated.

OR - malformations are very common, both veinous and arterial. Those common malformations + other MS risk factors (widely debated)=MS+CCSVI.
Not everyone with MS has CCSVI and maybe vice versa.
So this means that the autoimmune theory still stands (in general).
Which does make sense to me, who has a problem with gluten and who has done very well on beta-interferon (Rebif).

I think it is all going to be more complicated than people imagine.
I'm definitely confused but I think that's just down to age.


Algis wrote:
At least there is ~ 12 cases in Taiwan; as we see the doctor the same day; Tuesday morning...

But it's only 1 consultation in 1 day every 3 months in 1 hospital in 1 city...

I- for one - certainly never got enough sunshine.

But I cant relate to anybody else Cheers!!
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Cece
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PostPosted: Tue Sep 07, 2010 10:28 am 
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I don't have the statistics in front of me but I think Kuwait has been a country where MS has been increasing dramatically? Which opens speculation as to whether it's lifestyle changes or what could've caused the increase?

I should probably look this up before I speak from (MS-affected) memory!
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Rokkit
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PostPosted: Tue Sep 07, 2010 4:40 pm 
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Cece wrote:
I should probably look this up before I speak from (MS-affected) memory!

Nope, you are exactly right, MS or not. When Gici originally posted about Kuwait, everyone was like, there can't be 40,000 pwMS in Kuwait (or whatever the number was) it's more like 4000. But it turns out there has been a ridiculous increase there for who knows what reason and Gici's number was spot on.

Edit: I looked it up. Gici said 6000. Someone said more like 600, Lyon showed older research that said only 89. Turns out Gici was exactly right. The huge increase is a mystery. Here's the thread: http://www.thisisms.com/ftopic-11043-15 ... rasc-.html
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Cece
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PostPosted: Tue Sep 07, 2010 6:33 pm 
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Thanks Rokkit. :) I looked it up anyway, here's some speculation on the Kuwaiti increase:
Quote:
A 2005 study in the journal European Neurology showed that MS among Kuwaitis more than doubled between 1993 and 2000. And other studies, which looked more generally at the problems dubbed "Gulf War Syndrome," mention the possible dangers of oil-well smoke, vaccines and sarin from the destruction of weapons.

http://www.msrc.co.uk/index.cfm/fuseact ... ageid/1850

Quote:
Multiple Sclerosis Rates Elevated in Kuwait 1993-2000
Epidemiology of multiple sclerosis in Kuwait: new trends in incidence and prevalence.

The epidemiology of multiple sclerosis (MS) is undergoing dramatic changes; MS is occurring with increased frequency in many parts of the world. In this retrospective study, we examined the changes in incidence and prevalence of MS in Kuwait in the period between 1993 and 2000.

We analysed the records of patients with clinically defined and laboratory supported MS. The total incidence rate increased from 1.05/100,000 population in 1993 to 2.62/100,000 in 2000. The increased incidence of MS was most pronounced among Kuwaiti women (from 2.26/100,000 in 1993 to 7.79/100,000 in 2000. The total prevalence rate increased from 6.68/100,000 in 1993 to 14.77/100,000 in 2000. It was much higher for Kuwaitis (31.15/100,000), as compared to non-Kuwaitis (5.55/ 100,000), in a complete reversal of the pattern observed before 1990.

The prevalence was also higher among Kuwaiti women (35.54/100,000), as compared with Kuwaiti men (26.65/100,000). In conclusion, the incidence and prevalence of MS in Kuwait has increased between the early and late 1990s with no signs of leveling off. In a geographic area that was previously associated with low prevalence, local environmental factors may be responsible for these dramatic changes.

Alshubaili AF, Alramzy K, Ayyad YM, Gerish Y.
Department of Neurology, Ibn Sina Hospital, Safat, Kuwait.

Source: Veterans Today © 2007 The Veterans Today Network - All Rights Reserved (26/08/07)

If smoking is one of the few things that dramatically worsens the course of MS, maybe breathing oil well smoke is as well....
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jgkarob
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PostPosted: Wed Sep 08, 2010 1:00 am 
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Location: O Saviñao, Lugo, Galicia.
I was just idly thinking about that. Gulf War Syndrome (as far as I recollect) seems to have similar symptoms to MS, but with more breathing difficulties.

If you think about it, if MS numbers have risen due to people staying inside their houses more, due to air-conditioning, cultural changes etc, then MS should be a huge problem for all south mediterranean/north african/gulf states.
But is it?
If not, the Kuwait has a singular problem, perhaps due to the oil wells being set alight or some other problem?
Interesting.xx
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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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