This Is MS Multiple Sclerosis Community: Knowledge & Support

From Wikipedia´s article on Multiple Sclerosis today:

"Multiple sclerosis (abbreviated MS, also known as disseminated sclerosis or encephalomyelitis disseminata) is an idiopathic disease of suspected autoimmune cause, in which the body's immune response attacks a person's central nervous system (brain and spinal cord), leading to demyelination."
http://bit.ly/oAhV

and from NMMS homepage:

"MS is Thought to be an Autoimmune Disease"
http://bit.ly/3ofHP

(emphases mine)

Wasn´t both the NMMS and wikipedia recently more certain than this?

Not since I started reading up 2 yrs ago....MS was always a disease of "unknown aetiology" and the autoimmune theory was only a theory, since a specific antigenic target was ever found. But I could be wrong...
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Most any medical journal article from a reputable peer reviewed publication is going to have a statement like that. It is only when you get to less authoritative material that you start to see more certain and therefore false statements. The fact is nobody has certainty about the cause.

Autoimmunity is unproven. it is a theory, not a fact.

Here's an article from the Journal of the American Medical Association that begins with:



Munger, Kassandra et al. 2006 Serum 25-Hydroxyvitamin D Levels and Risk of Multiple Sclerosis

I happened to be reading this one on the way home on the train tonight, and I thought it had a very fair and typical explanation. If the folks at JAMA are uncertain, I think it speaks volumes. Ken

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My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

@cheerleader: I think you´re right, I just was under the impression that it was more certain than it was. But this opens up a whole other can if worms (for me at least).

So if I get a "probable" ms-diagnosis I probably have Multiple Sclerosis which is suspected to be Autoimune which by the way is a still only a theory. Great!

I just thought that science was about getting enough evidence and peer confirmations to be able to say with at least some certainty that your hypothesis is correct before treatments were based on your hypothesis. Isn´t "suspected" theories really the same as "unproven"?

Thomas,

I don't intend to sound like a smartie-pants, but I know I do sometimes come across that way. Science is excellent at stuff when the cause is determined with certainty. Polio is a good example.

When there is uncertainty, science isn't exactly so excellent. One of the biggest problems in MS is the wide-spread belief that it IS an autoimmune condition. IMHO, if we could convince science that it ought to me more open to other possibilities, rather then skewing resources toward autoimmunity, we might get somewhere faster.

That said, MS might be an autoimmune condition. But the key word is might. We have figured out how to cure mice of EAE though. Ken

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My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

@notasperfectasyou: you don´t sound like a smartie pants at all. I just don´t understand how MS treatment and research can be based on the suspicion that it is autoimmune. Science isn´t about suspicion is it?

You're right, Thomas. There is an immune response in MS, oligoclonal bands in CSF show this....and immune ablating/modulating medicines sort of work for a subset of MS patients. But because there has never been a reason found for this immune reaction, "auto-immunity" is presumed....but is presumption science? When Dom started posting the Zamboni research on iron deposition in gray matter and immune activation due to venous congestion and reflux (as first posited by Rindfleisch in 1830) I kinda found a new path. I know Ken and others are on another equally interesting path with antibiotics. We'll see where it all goes...

cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

On the question of autoimmunity... part of the confusion could be in the vocabulary definitions that scientists and laypeople are using. I understand scientists use the word, "hypothesis," when the facts are NOT there to prove their idea. They use "theory" when the PROOF has been established.

In the language of us nonscientists, "theory" has uncertainty.



Yes, autoimmunity is unproven -- to one group (scientists), it is a hypothesis; to the other group (nonscientists), it is a theory. It might help if we all had the same understanding of definition.

So do for stroke patient. Is it autoimmune, too?

The fact that firemen gather where a fire starts does not necessarily mean that they set it, too.

sou

Edit: Fixed a typo

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

Had a good discussion with my neuro about this subject. I believe that he thinks (and I know it is what I think) that it is a multi-faceted disease thats going to take a lot to eliminate.
For example (and not to start any arguments), IMHO, my theory is that MS is caused by a vascular condition which somehow(?) causes the injuries (the lesions) which in turn causes the immune system to attack the area in a mis-guided attempt to repair it. And in addition to that, I do think (but I'm not medically educated enough to guess how) iron is somehow involved with these 'injuries'.
But to me this explains how we have had doctors and studies that for years have said it's vascular, no it's auto-immune, no it's blood--brain barrier problem, no it's heavy metal problem, no it's a virus the immune system is after --- guess what -- IMHO they were all right!

The only thing that bugs me about my opinion that it starts as a vascular problem is the Faroe Island study and the general prevalence of MS in northern latitudes. As for northern latitudes I understand the vit-d/vein health theory, but personally my whole life up until heat related MS problems) was spent outdoors whenever possible, say at least 6 months a year of a lot of sunshine. I did summer farm work, sports, swimming, yard work, house painting - I grew up in the day of games were played outside, not on TV (I'm 53). I wish I knew my vit-d levels for those years, now I know it's a little low but I am not outside often.

It's far from proven that MS is related to low vitamin D levels, and may only be one facet in what causes the disease. But I don't think one can say for sure that his vitamin D levels were adequate from spending time outdoors. As you mentioned, it would be a good data point to know what our levels were when we were kids. Even with spending time out in the sun, maybe there were absorption issues, etc. Also, who knows if the current minimum standard for vitamin D levels (32 ng/ml) is really high enough.

That's not really accurate. I think many of those who received Campath would disagree that it "sort of" worked.

The key word there is "many". "many" patients will also tout the benefits of Avonex and Copaxone. Nothing certain about Campath by any means. Does it look like the absolute most promising pharmaceutical? Absolutely, but there are also many who will say the same thing about CCSVI and LDN and Tovaxin.....

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

True, and that's one reason I used the "many" qualifier. But for those people, it did a bit more than sort of worked.