This Is MS Multiple Sclerosis Community: Knowledge & Support

These two research papers should not be read on a full stomach. Remember the old theory - that MS was an inflammatory disease (auto-immune), lesions are the result of the attack on myelin (the white matter) etc etc etc. It took the researchers 50 years to come up with the theory and to develop drugs which have little real impact on this disease.

Now - the tune has change. MS involves the white matter and the grey matter. Inflammation may play some role but the disease is causing tissue damage all over the place.

I once saw a description of MS as 'a disease which progressively destroys the Central Nervous System'. The description seems spot on.

So the old theory looks outdated and the researchers can now spend the next 50 years exploring the new theory that MS is a global disease of the CNS.


Sorry to be so downbeat but you only have to look at the evidence to date to work out that this disease is a slow motion horror film. How many treatments have really worked? Really?

Until the researchers can find out what's driving this disease / s then we are pissing in the wind - statin, goats serum, abx, chemo, diet etc etc etc. What a sad state of affairs for the 21st century.

I've seen many websites where people see this disease as a challenge which God has given us lucky ones. If I ever get to heaven, the first thing I will do is to punch him (or her) on the nose. And I'll man the gates to ensure that anyone involved in MS research doesn't get in.


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I'll be right behind you

Elaine

If it cheers you up any, speaking of stomachs, how long did it take to figure out stomach ulcers were caused by Helicobacter pylori and treatable with antibiotics? I can remember within the last 15-20 years running across sufferers of stomach ulcers, painful, debilitating, condemed to ultra bland diets and swilling bottles of antacid. And now? I don't know anyone with a stomach ulcer. I don't know the exact magic year of discovery, having not suffered personally. Earliest PubMed abstracts are from 1989. I remember reading that to prove causation, a researcher deliberately infected himself with the bug, got imaging on his ulcer, and then treated himself with antibiotics and was cured, did more imaging to prove it. There was such a fixation on diet, bad psychological stress, excess stomach acid, etc causing stomach ulcers for decades that to prove to the medical community it was an infection took some drama to show it was so simple. Now you go in with an upper GI complaint and your doctor orders an H. pylori test right away. I'm glad on one level, but it seems embarrassing that it took so long.

On the MS front in the early 20th century, MS patients (usually the female ones) were thought to be hysterical; all those weird neurological symptoms that came and went just couldn't be REAL. We've come a long way, baby. MS is still rotten. It had to be worse back in the good old days when everyone believed you were just acting out.

I'm also discouraged about shooting in the dark, but unfortunately that is where we all still are at with MS. We would all rather not be here, but here we are. I totally agree, Bromley, that a fundamental improved understanding of what causes MS is critical to identifying better treatments.

As sad as the state of affairs is for MS, we are not unique in our frustration - we share the bitter plate with ALS, Parkinson's, Alzhiemer's, lupus, certain forms of arthritis, and a whole host of other people with rare neurodegenerative diseases, like Huntington's (HD). Some of the diseases like HD have their gene identified, and it still hasn't made for a real treatment breakthrough, which for people with that disease has got to be doubly frustrating in a different sort of way than MS. I don't count cancer in the same category with degenerative diseases - it has a different set of dynamics.

Not that having a lot of company in illness really makes anyone feel better, nor should it. But research into other diseases like adrenoleukodystrophy has turned up what might be some clues for MS, or at least new ways of thinking about MS. I personally believe that somewhere in the MS causation is a cluster of subtle metabolic defects, some of which have immunological components which might cause an aberrant response to a pathogen (like Cpn or other bugs) OR to self, others cause other effects, but the root cause is ultimately metabolic, and perhaps fixable with available knowledge. An additional complication is most likely not all people with MS have the same mix of genetic factors. Can I prove it by myself? No. Can I be totally wrong? Yes. But I might as well plug away at my own personal genetics project because no one else is going to. And my idea is certainly not unique. As we post here, researchers are scanning for candidate genes in MS families, trying to hone in. There is DNA sequencing and computing power now that did not exist ten years ago.

"Chance favors the prepared mind." (Pasteur, I think Somebody famous said that.) If I have any hope at this point, it is in the power of the exchange of information. As seemingly fruitless as our searching and posting seem at times, people have posted information that has made me explore, learn new things, and think. And I post back and hopefully give other people something to think about. I'm getting ready to email to some researchers who have published. There is a lot of brain power on this site of people thinking on different angles. We get to scan wide and consider a lot of possibilities for MS causation, because for better or worse, it is a wide open field. And maybe there will soon be an intersect with the population genetics research and the observational clinical characteristics of MS patients that will open a path forward.


Hang in there. Keep posting, everybody. Think of stomach ulcers, that once incurable gnawing misery.

Lisa

Lisa,

Of course you are right - I woke up in a bad mood and these two research articles made me feel worse. At least they seem to be getting a better understanding of the disease which should hopefully lead to treatments which really have an impact. But I'll never ever get use to the phrase brain atrophy!

All the best.

Ian

bromley what are the actual number's of MSer's that suffer brain atrophy???? My hubby isn't suffering from it at this point and we can't sit around worrying about something that just might never happen. Even if it is going to happen why waste time on it now???? Working on some natural ways to see it doesn't happen seems more productive. I agree with Lisa all hope is not lost and keep posting we might just figure it out ourselves.

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John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.

Melody,

Brain atrophy happens to all of us with MS - it's the main reason for irreversible disability. When the disease moves into the progressive stage it increases and that's why more disability is seen. The loss of axons and neurones leads to the brain shrinking. Black holes are another expression i.e. areas of tissue loss - these are picked up by MRIs. The experts know that there is damage to the grey matter (neurones) which contribute to the cognitive problems / memory problems. The brain tries to compensate by repairing or working around the damaged area. But over time it's fighting a losing battle. The UK MS Society is trialling a drug to see if it can slow or halt brain atrophy:

http://www.mssociety.org.uk/research/ms ... o2005.html

I only wish I was making this up.

Ian

Well saying that bromley is fine but MS doesn't always move into the progressive stage. Some people with MS don't progress much at all. I was looking at hubby's MRI from 1998 as well as the one from early 2005 and the only thing that appears different is that the lesion is definite now where it was inconclusive in the first. We have loads of people in our MS group that have had MS for years and they speak as well as anyone else I know. They don't babble on or forget things. There are a couple that I've noted have some problems but on the whole I'd say noticeable Brain atrophy represents a small percent in our group. We are usually a group of about 35 which is a fair number I'd say.

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John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.

Keep in mind, brain atrophy happens in *everyone* - it just happens faster in MS. That doesn't make it good, but it isn't something that is just because of MS. That's why many of us have the complaints of an 80 year old at the age of 40.

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Art Mellor Dx 2000
You can see what we have to offer at
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It's also accelerated in people who experience chronic pain as discussed in this journal article. Unfortunately, for us MS'ers we likely get hit doubly since many, including myself, experience chronic neuropathic pain on a daily basis.

NHE

Looking at it all from a different perspective here, folks, all these findings ALSO indicate that these issues are probably MUCH more treatable than originally thought!

Deb

Deb,

I think you are right. As they find out more about this disease (e.g. it's probably more than just a disease of myelin) then we get nearer to a better understanding of what's going on. MS appears to be a cascade of events and intervening with more effective treatments to stop the cascade of events should slow it down or halt it.

I'm sort of more positive now, even though they're finding out that this disease might be worse (e.g. more widespread) than originally thought.

Ian

Combatting neurodegeneration...

The effect of exercise on hippocampal integrity: review of recent research.
Int J Psychiatry Med. 2005;35(1):75-89.

NHE

Hey, NHE! Speaking of the above that you just mentioned, has anyone seen this? http://www.clinicaltrials.gov/ct/show/N ... 9?order=12

Remember all my talk and research about levetiracetam, too? Well, good old Vanderbilt here in Nashville is coming through after all!!! See the study they are about to undergo?

Yeah, team! Better late than never! It's amazing how it helps neuropathic pain..........no matter from WHAT cause it originates. And believe me, when it comes to suffering from chronic neuropathic pain and stiffness, it isn't just "mild" in me! I'm telling ya, I wouldn't be able to make it day to day without Keppra.



Deb

I'll tell you one thing folks....There is nary a day that passes that I don't learn something new and interesting about this dreaded malady. The "downs" make the "ups" that much better. It must be with dignity that we all have found ourselves here to blast the past and blaze a new trail...one that will put ms where it belongs--and we all know where that is.

Ian, I always giggle when I read your posts about the ms research scientists--keeping them out of heaven...Hah! And them coming back as lab rats in their next lives! Instead of running endless tests on the crabs that don't really work, they can run for hours on a spinning wheel~

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Holding out hope for Liberation!

I know that researchers disagree somewhat upon the cause and progression of MS but Mr W. Bruck appears to be particularly confused...

At the start of this thread Bromley posted two links, one of which was from W. Bruck entitled:

Inflammatory demyelination is not central to the pathogenesis of multiple sclerosis.

Pretty clear huh? Inflammation is not the central mechanism... Then of course there is another article from the self same person published within the same month entitled:

The pathology of multiple sclerosis is the result of focal inflammatory demyelination with axonal damage.

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Soooo, inflammation is the central mechanism...

Come on Mr Bruck, make your mind up!

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Do not go gentle into that good night. Rage, rage against the dying of the light.