Why is noone talking about it?

[gingermagic]

I agree Peter, we do need to be cautious. But we also need to be careful not to throw the baby out...etc etc.

 

Each treatment must be viewed on it's own merits. We gain nothing from grouping everything together in one big buddle. The 'this one didn't work, so the next one won't either' attitude is not going to help us.

 

Are we scared of loosing our DLA or something!

 

As someone with MS said to me,'They will find a cure for MS one day, but not today.'

 

Why not yet. Each theorey needs to be looked at idavidually. Remember 'Hope is a good thing thing' and not a dangerous weapon (if used carefully).

 

I was told HBO therapy would not work, I cannot live without it! I was told LDN doesn't work, I cannot live without it!

 

................I hope the pacific is as blue as it has been in my dreams.

[happyandy]

Maybe the reason that treatments work for RRMS and not for PPMS or SPMS is that they are distinct conditions requiring distinct treatments. A bit like herpes where it can be cold sores, chicken pox, shingles or the unmentionable one

 

Professor Andy, Diploma in stating the bleeding obvious, University of Life

 

 

PS. The pacific "They say it has no memory. That's where I want to live the rest of my life. A warm place with no memory." OK Ging or should I say Red ?

 

Andy

[gingermagic]

Maybe it's because I'm Irish!

[Marina]

found that post from a guy with ppms

 

PostPosted: Wed Jan 13, 2010 10:02 am Post subject: Reply with quote

Hi Alex

Firstly don't think that this will not help primary progressives.

I'm primary progressive and it helped me a lot.

Professor Zamboni found that the 10 primary progressives in his study, after initial improvement returned to baseline after 18 mths. They stopped progressing.

10 subjects is statistically insignificant, certainly not large enough to infer it won't help us.

I'm always willing to stand corrected :-) I totally agree that 10 subjects isn't enough to base anything on, but I do think they need to base it on a number nearer 1000 before they can beging to really be able to judge.

 

YMMV (Your Mileage May Vary) as they say...

[colmmc]

I'm always willing to stand corrected :-) I totally agree that 10 subjects isn't enough to base anything on, but I do think they need to base it on a number nearer 1000 before they can beging to really be able to judge.

 

YMMV (Your Mileage May Vary) as they say...

 

I would agree , But my hand is firmly in the air to be in the first 1000.

I was going to say "And I have ppms "but I think now I have MS Due to ccsvi.

 

colmmc

 

http://petitions.number10.gov.uk/CCSVINOW

[gingermagic]

If you take a look at the paper Marina, it is only 65 MSer's in total used in the study. 35 RR 20 SP 10PP. 235 controls were also tested (did not have MS). None of these people had dysfunction in their veins.

 

As people keep saying a small sample.

 

9/10 of the PPMSers had reflux in their Deep Cerebral Veins.

[ptlike]

I agree Peter, we do need to be cautious. But we also need to be careful not to throw the baby out...etc etc.

 

Each treatment must be viewed on it's own merits. We gain nothing from grouping everything together in one big buddle. The 'this one didn't work, so the next one won't either' attitude is not going to help us.

 

Are we scared of loosing our DLA or something!

 

As someone with MS said to me,'They will find a cure for MS one day, but not today.'

 

Why not yet. Each theorey needs to be looked at idavidually. Remember 'Hope is a good thing thing' and not a dangerous weapon (if used carefully).

 

I was told HBO therapy would not work, I cannot live without it! I was told LDN doesn't work, I cannot live without it!

 

................I hope the pacific is as blue as it has been in my dreams.

 

 

Hiya Ginger

 

Well I am optomistic a cure will be found and I trully hope this may be one, past experience reading about new treatment has made me a little sceptical I am sfraid.

 

Take care

 

Peter

[Lindyloo]

Its 2.30 am and we have just read and watched the u tube video - of IRISH BEAR 76... He has put into words exactly what WE think of the MS society.... The American MS society seems to mirror exactly what happens here in Ireland with our MS Society..

 

Fundraising, FUNDRAISING AND GUESS WHAT MORE FUNDRAISING!!! O and dont forget the week -end Conferences in Fancy Hotels... and of course the Annual Gala Dinners with guests being the local Councillors.. and saying well done etc etc...

 

I would love to see a change and for the MS SOCIETY to start to help us with trials for the amazing theories that are taking place right under our noses!!

 

How can a cure be ever found for us if the MS Society and big Drug Companies never acknowlege the great work that is being studied by these brilliant Doctors like Dr Biharri and Dr Zamboni...

 

My local ms society couldnt help me out a couple of months ago to help pay for cooker when it went on fire,,,they said they had no funds ...YET they have just invited me & Conor for a weekend away to a 5star hotel/castle all expenses paid... GO FIGURE!!

 

Anyway i have to get to bed before i fall off the chair - Thank you Gingermagic and Col for bringing this to our attention...FASCINATING!!

 

LINDA & CONOR XX

[gingermagic]

We need to get this into the open. People need to talk. If it only stays in the MS community it will end up as a potential storm in a tea cup.

 

Make a fuss. Tell your GP, your neurologist, even though they might ignore you!

 

I have contacted some cardiovascular and interventional radiologist consultants who said that they are interested but I need referal from my neurologist. Fat Chance!

 

CCVSI was in the daily mail last week.

 

It might be bollocks, but let us get to the bottom of this. Time is not on side.

[happyandy]

Folks,

 

There seems to be an argument within the scientific community over whether MS is an auto immune disorder or a vascular problem. however I don't see that they are mutually exclusive. The Brain-Blood-Barrier is what links the two.

 

From what I have read the blood-brain barrier (BBB) is a separation of circulating blood and cerebrospinal fluid ( CSF) maintained by the choroid plexus in the central nervous system ( CNS). (OK I copied it !)

 

Normally, a person's nervous system would be inaccessible to the white blood cells due to the blood-brain barrier. However, it has been shown using Magnetic Resonance Imaging, that when a person is undergoing an MS "attack," the blood-brain barrier has broken down in a section of the brain or spinal cord, allowing white blood cells called T lymphocytes to cross over and attack the myelin.

 

TYSABRI appears to be the most efficient drug in the treatment of RRMS. TYSABRI works by stopping the white blood cells from moving the blood stream into the brain. This reduces inflammation, and the nerve damage caused by MS.

 

Interferon drugs hamper the effectiveness of another Interferon which activate T - Cells which again reduces inflammation, and the nerve damage caused by MS.

 

So if we make the leap of faith that the BBB breach is a major contributory factor what is causing the breach ?

 

Dr Zamboni thinks that narrowing jugular vein and the azygous vein creating a reflux situation. Reflux is when blood cannot pass by an obstruction. This distends blood vessels, and allows for leakage. Cue activated T-Cell

 

Then you would look at what causes the narrowing of the veins. Genetics, free radicals .....

 

Makes you think

 

Andy

[Michelle]

It does indeed.

 

 

Michelle

[Marina]

If you take a look at the paper Marina, it is only 65 MSer's in total used in the study. 35 RR 20 SP 10PP. 235 controls were also tested (did not have MS). None of these people had dysfunction in their veins.

 

As people keep saying a small sample.

 

9/10 of the PPMSers had reflux in their Deep Cerebral Veins.

Yes I did notice that that was only 65 MSers in total:

On the whole, I tend to be like a few others here in that I'm always sceptical of any newly publicised treatment until we see firm evidence of its working for 1000s of people rather than just 65, after all full trials have been carried out.

But, to be honest, I haven't had time or brain ability to sift through any papers other than what the MS Trust wrote and a couple of other equally brief mentions of it, so I missed the part about 9/10 PPMSers having reflux.

 

This whole CCSVI thing does indeed sound most promising, especially if could help ALL types of MS which would be a big-time first. This whole topic is fascinating! Thanks all for your inputs, great work! But I still can't help but reserve judgement until far more is known about it

[Oops]

Having read as much as I can stomach on this, I'm in the "watch and wait" category. I can see the arguement for how it explains relapses, and hence how it can apply to SPMSers as well, since they started off with relapses, but I can't for the life of me work out how it explains PPMS in those of us who follow a "plateau and dip" pattern rather than a steady course. But then, I'm no scientist, so I may just not be able to get my head around it well enough.

 

I DO believe that there is an auto-immune element, whether the vascular thing turns out to be relevant or not. I suffered from the asthma/excema/hay fever triangle as a child, and still find to this day that my skin flares up when my MS is being more active. There is a long history of various auto-immune in our family, although I am so far the only MSer. I also have a best mate with Psioritic (sp) Arthritis (a rare form of Rheumatoid) and Addisons, both proven as auto-immune, and a quick comparison of our triggers reveals startling similarities. Add into that the effects of both viruses and pregnancy on MS in relation to the immune system, and it's a connection that's impossible to ignore.

 

Maybe there is a vascular bit to the puzzle as well, but I doubt it will turn out to be the panacea. I would personally predict that it turns out to be an alternative/differential diagnosis that rules out MS for a good many of todays sufferers, rather than an explanation for MS in itself - MS isn't actually very common in it's most diagnostically certain form, after all, and may not even be all one disease. If I ultimately turn out to be right, that would still be a good thing, as it will still reduce suffering, which is the name of the whole game.

 

I've never been a believer in pharmaceutical conspiracy theories in the context of socialised medicine. In a US-style insurance-funded/manipulated system, sure, but not within the NHS, with cost/benefit analyses being performed with ever increasing strictness.

 

I'm certainly following this with interest, but not with any particular excitement.

[linds]

They often say that ms is a condition involving many causes - maybe that if why some treatments work for one and yet not another. If they found the cause maybe the cure would be available. Linds

[ptlike]

Its 2.30 am and we have just read and watched the u tube video - of IRISH BEAR 76... He has put into words exactly what WE think of the MS society.... The American MS society seems to mirror exactly what happens here in Ireland with our MS Society..

 

Fundraising, FUNDRAISING AND GUESS WHAT MORE FUNDRAISING!!! O and dont forget the week -end Conferences in Fancy Hotels... and of course the Annual Gala Dinners with guests being the local Councillors.. and saying well done etc etc...

 

I would love to see a change and for the MS SOCIETY to start to help us with trials for the amazing theories that are taking place right under our noses!!

 

How can a cure be ever found for us if the MS Society and big Drug Companies never acknowlege the great work that is being studied by these brilliant Doctors like Dr Biharri and Dr Zamboni...

 

My local ms society couldnt help me out a couple of months ago to help pay for cooker when it went on fire,,,they said they had no funds ...YET they have just invited me & Conor for a weekend away to a 5star hotel/castle all expenses paid... GO FIGURE!!

 

Anyway i have to get to bed before i fall off the chair - Thank you Gingermagic and Col for bringing this to our attention...FASCINATING!!

 

LINDA & CONOR XX

 

 

Hi Linda and Conor

 

Is the holiday transferable??????????????

 

Peter

[gingermagic]

Having read as much as I can stomach on this, I'm in the "watch and wait" category. I can see the arguement for how it explains relapses, and hence how it can apply to SPMSers as well, since they started off with relapses, but I can't for the life of me work out how it explains PPMS in those of us who follow a "plateau and dip" pattern rather than a steady course. But then, I'm no scientist, so I may just not be able to get my head around it well enough.

 

I DO believe that there is an auto-immune element, whether the vascular thing turns out to be relevant or not. I suffered from the asthma/excema/hay fever triangle as a child, and still find to this day that my skin flares up when my MS is being more active. There is a long history of various auto-immune in our family, although I am so far the only MSer. I also have a best mate with Psioritic (sp) Arthritis (a rare form of Rheumatoid) and Addisons, both proven as auto-immune, and a quick comparison of our triggers reveals startling similarities. Add into that the effects of both viruses and pregnancy on MS in relation to the immune system, and it's a connection that's impossible to ignore.

 

Maybe there is a vascular bit to the puzzle as well, but I doubt it will turn out to be the panacea. I would personally predict that it turns out to be an alternative/differential diagnosis that rules out MS for a good many of todays sufferers, rather than an explanation for MS in itself - MS isn't actually very common in it's most diagnostically certain form, after all, and may not even be all one disease. If I ultimately turn out to be right, that would still be a good thing, as it will still reduce suffering, which is the name of the whole game.

 

I've never been a believer in pharmaceutical conspiracy theories in the context of socialised medicine. In a US-style insurance-funded/manipulated system, sure, but not within the NHS, with cost/benefit analyses being performed with ever increasing strictness.

 

I'm certainly following this with interest, but not with any particular excitement.

 

The regular defined pattern of lesions in the brain, support a ciculatory problem rather than an autoimmune one. This also supports PPMS more than RRMS, which can be hypothysised from Dr Zamboni's results. There has been much discusion that PPMS and RRMS are two different illnesses, as you are probabley aware.

 

The way in which the blood brain barrier has been brought into the autoimmune argument has been used to satisfy the argument, and not to prove it. Also, within reaserch, the argument that MS has a circulatory cause pre-dates an auto immune one.

 

As I have mentioned before the autoimmune theory was based on a series of models carried out in animals, not in humans. Making it spurious. The nervous system, and brain especially is the main thing which seperates most genuses.

 

As I have said previousley, although CCSVI is a long way from being proven, it is AS valid as the autoimmune one in many respects. i.e. both are un proven.

 

The reason I am so keen for everyone to write to their MP, sign every petition going, including the No 10 one (thanks column, if you can't find the link here, google it please!) is that we need to have this argument proved for good.

 

In this thread, everyone, advocate of CCVSI or not, believes further research is needed. This will only happen if you put your hand in the air (and preferabley shout, maybe even hold up one of those distress beacons etc).

 

Sorry for the soap box. Remember lets reap the benefit of our democracy!

[Oops]

The regular defined pattern of lesions in the brain, support a ciculatory problem rather than an autoimmune one. This also supports PPMS more than RRMS, which can be hypothysised from Dr Zamboni's results.

 

That's the bit that loses me. I'm PPMS, and show only two lesions on MRI. My Physio's mum is PPMS and has never shown any lesions on MRI. Lack of visible lesions is the norm for PPMS as far as I can tell, both through research and anecdotally from my MS Nurse. It's one of the reasons why diagnosing PPMS is so difficult, and is also one of the main reasons why it is conjectured to be a seperate disease. It usually presents completely differently to all the other forms of MS. Sure, there are exceptions to this, but that is the general rule.

 

I do, however, agree that open-minded research is the only way to know for sure, so it is with that in mind that I've signed the petition.

[happyandy]

Ginger,

 

Im a bit confused by Zambonis results with regards to PPMS, was it effective ?

 

Andy

[colmmc]

I am supposed to be ppms but I have Lesions in fact Dawson's fingers

but as I have said before I think the whole labeling ppms rrms spms

is a way of trying to explain away the different experience we were all having.

while still grouping them under the heading ms.

In my humble opinion they were trying to explain something to us, that they were clueless about.And up untill now bullshit has baffled Brains.

 

colmmc

I have ms due to ccsvi

 

http://petitions.number10.gov.uk/CCSVINOW

[gingermagic]

That's the bit that loses me. I'm PPMS, and show only two lesions on MRI. My Physio's mum is PPMS and has never shown any lesions on MRI. Lack of visible lesions is the norm for PPMS as far as I can tell, both through research and anecdotally from my MS Nurse. It's one of the reasons why diagnosing PPMS is so difficult, and is also one of the main reasons why it is conjectured to be a seperate disease. It usually presents completely differently to all the other forms of MS. Sure, there are exceptions to this, but that is the general rule.

 

I do, however, agree that open-minded research is the only way to know for sure, so it is with that in mind that I've signed the petition.

 

To be honest Oops, I do not understand the biology of PPMS or RRMS to say why lesions appear and I think that although they can be used to identify MS, they feature less in the direct cause of symptoms. If someone can comment on this I would appreciate being enlightened!

 

The non auto immune theory says that damage to the brain is the initial starting block (the part which makes myelin). This damage to the brain then triggers an auto immune response as a by product (sort of egg and chicken). It is damage to the oligodendrocyte brain cells. The reason that the damage is caused is unknown, but there are allot of theories, that where vitamn D etc comes in (basically its environmental and genetic).

 

This means that although lesions caused damage to her brain, they were not the cause of her MS, which was damage to her oligodendrocyte brain cells (in the reticular formation.....I think!) No oligodendrocyte brain cells no myelin.

 

This theory came from the autopsy of a young girl in Australia. Her brain revealed that almost her first lesion had formed in a critical part of the brain during her first relapse (extremely rare), and she had died as a result. The autopsy showed no signs of an auto immune response in her brain, although lesions were identified. From this they hypothesised that an auto immune response could not be the cause of the lesions.

 

This is obviously an incredibly rare occurrence and this eventuality cannot be researched on a regular basis.

 

Thanks Oops

 

Andy. Dr Zamboni researched 300 people, 0nly 10 had PPMS. However 90%of this sample showed reflux in a defined vein (DCV).

 

Cheers guys. J

Edited 25 Jan 2010, 6:43 am by gingermagic

[colmmc]

Lifted from Facebook Today

 

Major News breaking NOW! CCSVI, in which the veins in the neck and chest do not allow blood to flow properly has just been ratified by 47 experts in different countries worldwide, as being CONGENITAL This means that the medical arena are unamiously that CCSVI is a legitimate condition from birth, and as such, enters the medical field as "Something wrong that needs fixing" I cannot describe how important this is...

 

colmmc

[Christina]

Whilst I may be able to accept that CCVSI may be a legitimate condition causing problems for a number of MS sufferers, I still don't see how it can apply to all people diagnosed with MS. I know I don't have narrowed carotid arteries because I've had them tested a couple of years ago and I've been having MS symptoms for around 15 years in total. I guess the Neurologists will need quite some convincing about this theory because it will ultimately have to be them or GPs that refer people for testing.

 

Chris x

[gingermagic]

You beat me to it col.

 

People, this is one of the most significant findings for ms in the last.............well a long time.

 

A Consensus Conference on Venous Malformations - headed by Prof. Byung B Lee from Georgetown - and experts from 47 countries studied the evidence and unanimously voted in favour of officially including the stenosing lesions found in CCSVI in the new Consensus document and Guidelines.

 

Wow

[happyandy]

Since my two MRI scans (both head and spine) are available would it be worth asking them to have a look to see if I show evidence of CCVSI ? Or is it only the doppler thinggy that shows it ?

 

Andy

[solrose]

Chris,

 

It should be narrowed veins rather than arteries, mainly the internal jugular vein. I will ask my neuro or GP to test these veins for me.

 

I'm so glad that things seem to be promising

 

 

Good luck to all of us

Solrose