A blow to revolutionary MS therapy

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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BooBear
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Post by BooBear »

I am wondering where the double-blind study can be found that proves the autoimmune theory.
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Zeureka
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Post by Zeureka »

BooBear wrote:I am wondering where the double-blind study can be found that proves the autoimmune theory.
Yes, in fact - I asked a neurologist precisely this question - whether all the mechanisms thought to be involved in the auto-immune process causing MS are proven (still many theories and open questions on precise multifactorial interactions!)...so why exclude anything additional could play a role.
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BooBear
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Post by BooBear »

In fact, Z, I am beginning to wonder if the process is truly autoimmune at all.

It's clear that our own cells are attacking the myelin- I am not disputing that- but is this occurring because our cells are confused, or are they doing their job?

Iron is necessary for myelin, but what if there was too much iron there? Would our immune system, considering the toxicity of iron in the brain, attack the excess that it finds until there is none left in that area? The lesions then form to cover the exposed nerve and we all know what happens then.

But I just wonder- because there are other neurological lesions that can occur which are not MS-related; I wonder if any of those are "autoimmune".

Nevertheless, there is NO PROOF of an autoimmune connection to MS. So as soon as a doctor shows me that, I will shut up.
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mrhodes40
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Post by mrhodes40 »

Nevertheless, there is NO PROOF of an autoimmune connection to MS. So as soon as a doctor shows me that, I will shut up.
_________________
fact there is no proof that MS is autoimmune.

There are myelin active T cells................ but there are myelin active T cells in any kind of trauma to the brain, spinal cord injury and stroke both have large increases in myelin active T cells.

Ongoing trauma would result in ongoing myelin active T cells.

Oligoclonal bands are also not specific to MS.

The most recent research on the cutting edge in multiple sclerosis is done Barnett et al in 2009 and they confirm yet again that the oligodendrocytes died when there are no immune cells at all in the area.(their first paper was in 04)

It appears that the macrophage that goes into the lesion area -- so frequently offered as "proof" that MS is autoimmune-- is actually there to clean up the oligodendrocyte that died first.

Such activity by the immune system is a normal reaction to damage.

When I say "it appears" that's a fact. No one has disputed the Barnett et al research however and there is no counter research, but theoretically you can apparently still find a way for autoimmunity to be part of this process that appears to be normal immune reactivity.

Dr. prineas himself in an interview with the Australian multiple sclerosis society after he received the Charcot award mentioned that he thought perhaps the oligodendrocytes could have died as a result of "standby damage" such as what is seen in Devic disease.

In Devic disease, the astrocytes is attacked by a very specific cell but the oligodendrocyte ends up dying as a side effect of that.

Dr. Prineas was wondering if there is some factor in the serum that causes the oligodendrocyte to die, then the immune system goes in to clean up starting the whole process that we have always been told is MS but with this other as yet undescribed and theoretical factor in the serum as the real culprit in MS.

in this case it is an elaborate Rube Goldberg type of deal that they have no idea what the first event was.

Is it possible it is hypoxic damage caused by venous insufficiency that is the first event?

I have been waiting for Prineas to say what he thinks. I wrote to Barnett at his public email about 12 months ago and got a one sentence response of no he didn't see how veins could have anything to do with MS....

it is a lot to get your head around when you never ever read any research in the field of venous insufficiency. If not, you cannot know how it triggers immune system activity that damages the tissue and is very VERY similar to MS immune system activity, and instead you just think of venous insufficiency as vericose veins that make ankles puff up.

Of course puffy ankles seem ridiculously unrelated to anything like MS which is viewed as orders of magnitude more complex.

The problem is specialization and clique-ish medical specialties.

I am writing a book it is under contract already. 8O It is about 300 pages and is about all this stuff and nearly done. :!:

I am never here any more because I am darned busy........
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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sbr487
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Post by sbr487 »

Even if MS is proved to be auto-immune, auto-immune itself means a disease of unknown origin. They know that immune is erratic but dont know the reason for that. Can be reaction to environment, in genes etc. I think CCSVI is just saying, "hey, you know what? now we know the reason for immune misbehavior, lets not call it auto-immune". I think the opposition is due to:
1) neuro research who have invested so much
2) it offers a non drug treatment
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Post by Cece »

I look forward to reading that book!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
malden

Post by malden »

sofia wrote:So we are here left with is:

1) A whole lot of professors saying they can both see structural problems with the veines, that has impact on flow, and they can correct them.

2) A whole lot of profesors that can not find any strucural abnormalities, and if there is any, they do not have any impact on flow.

3) A whole lot of patients saying we feel liberated after professor found ccsvi and did the procedure.


If group 2 is correct, it suggests that group 1 and 3 lies.
If group 1 and 3 are correct is suggests that group 2 needs to take a better look.
If group 2 and 3 are correct, that suggests that there is something in procedure other then ballooning and stenting which make them feel liberated.

What that can be? Maybe the drugs that they take during/after procedure (some a long period after...)?

M.
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jackiejay
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Post by jackiejay »

would that be blood thinners then?....
malden

Post by malden »

jackiejay wrote:would that be blood thinners then?....
http://www.thisisms.com/ftopicp-116247.html#116247
...last month I started with Aspirin 500 mg 2x per day, 5 days, then reduce it to 1 per day, 10 days, and now I am on 200 mg per day.

Suprisingly, I feel better (less morning fatigue, less sluggishness, able to focus on work, more stable on legs, less stagering...)

Btw, I didnt take any medications before this Aspirin cure.
I am still on one/day 300mg acetylsalicylic acid with buffer, and still feel goood - without stents or ballooning ;)

M.
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L
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Post by L »

Malden wrote:
jackiejay wrote:would that be blood thinners then?....
http://www.thisisms.com/ftopicp-116247.html#116247
...last month I started with Aspirin 500 mg 2x per day, 5 days, then reduce it to 1 per day, 10 days, and now I am on 200 mg per day.

Suprisingly, I feel better (less morning fatigue, less sluggishness, able to focus on work, more stable on legs, less stagering...)

Btw, I didnt take any medications before this Aspirin cure.
I am still on one/day 300mg acetylsalicylic acid with buffer, and still feel goood - without stents or ballooning ;)

M.
That's good. I tried daily aspirin for a month but I didn't notice any benefits at all.
malden

Post by malden »

L wrote:... I tried daily aspirin for a month but I didn't notice any benefits at all.
Is this 80 mg /day?

M.
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L
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Post by L »

Malden wrote:
L wrote:... I tried daily aspirin for a month but I didn't notice any benefits at all.
Is this 80 mg /day?

M.
It was the standard pill, what's that? 200mg?

What's your theory as to why aspirin may be helping you?
malden

Post by malden »

L wrote:
Malden wrote:
L wrote:... I tried daily aspirin for a month but I didn't notice any benefits at all.
Is this 80 mg /day?

M.
It was the standard pill, what's that? 200mg?

What's your theory as to why aspirin may be helping you?
Aspirin is a pain reliever with anti-inflammatory effects. Antiinflammatory steroids (or corticosteroids) have good efects in MS pulse therapy - we all know this, I personaly with Solu-Medrol infusions. I decided rather to take aspirin-like pills than go with corticosteroids. (If this works.... we will see).

Best regards,

M.
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Zeureka
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Post by Zeureka »

L wrote:
Malden wrote:
L wrote:... I tried daily aspirin for a month but I didn't notice any benefits at all.
Is this 80 mg /day?

M.
It was the standard pill, what's that? 200mg?

What's your theory as to why aspirin may be helping you?
mine are 400 mg one effervescent tablet but you should see it on your pack or in the leaflet. I may try for a week to see if notice a difference. At least make that pharma-company happy for a while :lol: - but there are also alternative slightly cheaper acetylsalicic acid brands on the market.
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