From the annals of neurology-response by Prineas and Barnett

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby Felly » Wed Sep 01, 2004 7:08 am

Thank you Finn for your posts, much more lucid than mine.

A couple of points. I agree with you that immunopathological studies shouldn't be the only way to investigate MS. But inflammation is pathognomonic in most neurodegenerative disease, albeit in MS as a secondary response to a primary pathogen (s).

For some time I have been looking at the role of brain chemistry in MS, along the lines that Harry mentions in his earlier post.

The reason I find the Lucchinetti argument persuasive is not because it sheds light on the cause (s) of MS but because through the identification of the various sub types in MS we may find better ways to treat the condition. More tailored to the individual’s disease pattern and less that of some one size fits all category.

It also fits with the idea that biochemical processes may be more important in some types of MS than in others. What if the reason the CRABS work effectively only in a minority of cases is because these are the cases with a more aggressive immune component?

Similarly, maybe antibiotics only work (I am not referring to minocycline neuro-protective benefits here) in the cases where MS has been caused by an infection such as described in other threads.

This may explain why in any MS cohort testing for a certain pathogen say, Chlamydia pneumoniae, not everyone will have antibodies to it, while one or two may have high levels.

So far these studies have been used to rule out pathogens but if we consider MS as a syndrome then it would less likely to find that in a random group of people with MS all have the same cause when testing for a pathogen.

I too usually go with Occam, but, in this case, I think MS could be a syndrome – many triggers and multiple factors. The primary link, an immune system reaction –dependent on the sub type and disease progression.

I think most MS researchers are concluding MS is not an auto-immune disease in the traditional sense and are more likely to classify it as neuro-degenerative. But the immune system is frustratingly complicated, for example, in Alzheimer’s they have identified over 40 different types of immune reaction going on. It just isn’t as simple as saying it is or it isn’t an immune disorder.

I think, whichever way you look at it, the immune system plays a role. Neurotransmitters govern the immune system. For example, Norepinephrine (adrenaline) helps downplay autoimmune reactions. Just out of interest the components of norepinephrine are the amino acids dl-phenylanine and Tyrosine (anyone remember the Loder regime which included phenylanine?).

Hormones are often neurochemicals – oestrogen, progesterone etc. All play a part in modifying the immune reaction. Does this mean a lack of these hormones or a hormonal imbalance could be the cause of MS? My instinct says no, but that they are more likely to play a role in modifying the condition though the immune system, but then again, maybe these are the causes for some people. And so it goes on.

It’s a bit chicken and egg –what comes first the immune reaction or the changes in biochemistry. If the immune reaction comes first caused by outside pathogens then this would also alter brain chemistry but if the brain chemistry altering the immune system comes first it could be because of many thousands of complex reasons. Hence back to the many causes argument.

I agree inflammation has been overplayed, it must be about getting the balance right – too much inflammation and you do get axonal damage (as a direct result of the inflammation not just as a bystander action), too little inflammation and if MS is cause by a pathogen then this too is damaging as the inflammation may well be protective.

I would love to believe MS has a single cause as it would make everything seem, at least, more hopeful, alas I think the lack of a single cause means there can be no simple therapies to prevent or treat MS.


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Postby finn » Sun Sep 05, 2004 6:14 am

Sorry, time to leave the board.

-finn
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Postby Felly » Sun Sep 05, 2004 7:29 am

Moi! Finn,

Interesting debate... I agree with much of what you say, but I still stand by the syndrome argument. However, this does not exclude that at some point they trace it all forms back to a faulty gene, that the blood brain barrier is too weak, or myelin is immature in all cases of MS. Although I think all of these avenues have been exchaustively searched without conclusion.

Tell me more about this P.O Bahan. I confess I have not come across him/her.

Meantime, I will send you a link throught the pm, to something I would like your opinion on.


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Postby finn » Sun Sep 05, 2004 7:45 am

Sorry, time to leave the board.

-finn
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Postby HarryZ » Sun Sep 05, 2004 9:35 am

Finn,

I have read Behan's paper a number of times and each time I always seem to see something that I missed the previous time.

In the two years since his paper has been published I have not read too many articles from other MS "experts" that have contradicted some of his theories. I know our "friends" at the NMSS stated that they would have to study his paper before commenting....and not to our surprise, they haven't said anything since!

While I'm sure that everything Behan has stated isn't "gospel", it certainly has spun a number of heads and made people think in other directions. I'm sure that the CRAB "pharmies" hope he simply disappears :-)))

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Postby finn » Fri Sep 10, 2004 3:54 am

Sorry, time to leave the board.

-finn
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Postby HarryZ » Fri Sep 10, 2004 6:21 am

Finn,

Reingold has made a few comments here and there when questioned by a reporter on Behan's paper but I haven't seen a separate press release that the NMSS has been known to issue on such matters.

Have you seen something that I may have missed?

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Postby finn » Sun Sep 12, 2004 3:33 am

Sorry, time to leave the board.

-finn
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Postby HarryZ » Sun Sep 12, 2004 7:17 am

Finn,

You certainly hit the "proverbial nail" on the head with all of your comments! You pretty well summarized the situation exactly as it exists today and why MS research operates the way that it does.

I really agree with your comment that most MS patients do not follow MS research on the internet. I have made similar comments on various MS forums when some readers can't understand why the world of MS medicine doesn't change very much. One excellent example of that is here in London, Canada which has a notable MS Clinic which has over 5,000 patients that use it. We have spoken to many MS patients in this area since moving here 2 years ago and it is unbelievable how many of them have absolutely no idea of what is taking place with MS therapies. Almost all of their info comes from the neuros at the Clinic.

BTW, do you follow ice hockey at all? Finland is playing Canada in the World Cup of Hockey final on Tuesday.

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Postby mscaregiver » Sun Sep 12, 2004 10:43 am

What I find even more amazing than the apathy of people with all kinds of diseases and their knowledge of what is currently going on specific to their situation, is what the doctors who treat people know.

I understand it is a frustrating and mind numbing process trying to get information on anything that is so complex and multi demensional as this disease or any disease actually, and I think many folks just hope for the best and try and do their best and place their faith in those who are supposed to have the knowledge to help them.

Wouldnt it be a wonderful world we lived in if all the doctors in the world had a thought process like David, or other microbiologist, or any doctor that doesnt let greed or ego override the desire to truely find help and cures and cause for those dealing with these horrid medical conditions.

But when it comes to medical professionals, I have a whole different mindset on them, They for the most part are clueless about current studies or treatments, Kathleen’s neuro had no idea of anything other than the standard ABCR treatments and then of coarse chemo, her primary care physician was just as clueless but much more open minded about hearing about current treatments and studies and trials.

Her neurologist was so lost he would actually get upset when I would ask about many different current thoughts and possible treatments and go into a rambling speech about how nothing but FDA approved treatments would help someone with MS.

He doesn't like me at all, until I arrived, he just wrote out script after script and never was asked questions, now he has to actually explain things and he doesn't like that at all.

But that’s ok with me; I actually enjoy it, because now he knows he has to be ready, that means he has to do some research, and hopefully that means others have a doctor who at least knows something current about what is going on, even if he is totally opposed to anything other than traditional treatments.

I understand that doctors can only do as they are trained to do, I understand they are also constrained by many outside entities, but that doesn't mean they can’t get off their lazy butts and do some research on what is happening "now" in regards to the people they are supposed to help.

There is another aspect as to what people who need a doctor, such as a neurologist, have to unfortunately deal with, here in our area of Virginia getting a neurologist is not an easy task, and to get a new one is a 6 month to 12 month process, so people who suffer from MS and other neurological and other types of long term illness need these doctors, and cannot wait 6 months to a year to see a new one.

As I have heard so many say in the waiting area of doctor’s offices, they feel trapped and are even afraid to ask about other treatments, they say "why does he get so upset if you ask about things he doesnt know about?" "what if he won’t see me anymore"? "what if he decides I am not worth his time"? Isn’t it sad that people not only have to live with and deal with a debilitating disease, but live in fear of the people who is supposed to help them, very very sad..
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Postby finn » Sun Sep 12, 2004 11:40 am

Sorry, time to leave the board.

-finn
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Postby HarryZ » Sun Sep 12, 2004 12:13 pm

Finn,

YES! I already have a sixpack waiting in the fridge.

They don't play good looking hockey, but they sure are effective. Finland wins 1-2.


I'm thinking that the game comes on tv in Finland about 0200 a.m.!!
Perhaps a pot of coffee might be better :-))))))

The hockey, while not the best for this time of year and considering the teams have only played together for a few weeks, is intense and enjoyable. And Canada will likely win....4-1 :-)))

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Postby OddDuck » Mon Sep 13, 2004 11:07 am

Hey, Philip! You go, buddy!

I may have been "quiet" around here lately, but let me tell you, I haven't let up one iota with the doctors around here!

I won't go into it all, but you hit the nail on the head about doctors not wanting to get off their lazy butts and RESEARCH! I told my PCP about Keppra, for instance, for weeks, and then when it comes time to titrate it upward for me a little bit (which we knew would be needed eventually), he's suddenly afraid to do it because he "doesn't know much about that particular drug"! Uh......have I not TOLD him to LOOK IT UP for weeks now? Come on....what the heck is THAT kind of response to me?

Vandy better be ready for me, because I'm telling ya right now, I'm double-cocked and double-loaded with questions. Now not only regarding MS, but about MD and ALS, too!! They might as well make me an intern!

:wink:

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Postby Felly » Tue Sep 14, 2004 2:38 pm

HarryZ wrote:The hockey, while not the best for this time of year and considering the teams have only played together for a few weeks, is intense and enjoyable. And Canada will likely win....4-1 :-)))

Harry


I know nothing about ice hockey but in the interests of European Unity I have to say 1-0 to Finland:-)

Ciao,
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Postby HarryZ » Tue Sep 14, 2004 8:23 pm

Felly, Finn,

I know nothing about ice hockey but in the interests of European Unity I have to say 1-0 to Finland:-)


I regret to announce that European Unity will have to wait for another day....Canada won 3-2. :D

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