Saturday, June 02, 2007

Has Anyone Else Been Following This?..(Time For An MS Update)

I've posted information here before about my involvement with NARCOMS (North American Research Committee on MS) and information regarding what it is NARCOMS does...they do biannual surveys with people diagnosed with MS. Enrollment is painless and the surveys can be done on line (if you are interested in learning more, go to ). The information provided by those of us with MS is used to monitor and track important trends and demographic information in Multiple Sclerosis.

One of the benefits of enrollment is being sent their quarterly magazine/review (see picture). This magazine is filled with interesting research information, studies, current trends in MS, and is written for knuckle heads like ME to understand it! LOL

In this quarter's edition, there is an article called, "Nerve Fibers are Severed by Inflammation in MS Lesions, Leading to Permanent Disabilities"...Wha???? This article is fascinating and gives evidence that MS is no longer being thought of as merely a disease of the "white matter" (not the Caucasian population here, peeps...the white matter of the brain!). Since the advent of the MRI, Multiple Sclerosis has been thought to primarily effect only the white matter of the brain (there are white and grey's called "white matter" because on autopsy, the tissue appears white-ish) because the technique of the MRI is quite skilled at viewing inflammation in these areas (that's why you get that contrast dye shot in your these lesions can be discovered/light up/found). The MRI is NOT a good tool at detecting inflammation in the GREY MATTER of the brain, however (that's the outer areas of the brain, responsible for things like sensory and motor skills).

The article indicates that there CAN be inflammation/damage/lesion activity in the grey matter of the brain with MS also and this damage can be very clinically just goes undetected with a standard MRI.

The article also points a shaking finger at the idea clinically silent lesions (the ones that form and we don't even know it because they don't cause an apparent relapse/change in symptoms) are DAMAGING and SIGNIFICANT. Let me quote a snippet here at the risk of being sued:

"Magnetic resonance imaging (MRI) has been extremely useful in extending researchers' understanding of MS. MRI scans show that there are many more lesions in the nervous system of may people with MS than might be expected from their disabilities. This seems to be because most occur in parts of the nervous system that are not immediately responsible for some sort of behavioral output, like walking or speaking, or sensory perception. Therefore, even during the "remitting" phases of RRMS (Relapsing and Remitting), there is generally ongoing damage from MS in these clinically silent lesions. Therefore, damage to the nervous system can be much more extensive than would be guessed by looking at a patient's symptoms alone."

So what does this mean really? Well, what the researchers are saying is, those of us with RRMS can continue to have clinically significant damage occurring in our brains, sometimes even WITHOUT outward signs it is happening. And with the idea that axons (those pesky nerve fibers, which are surrounded by myelin...the whole reason we talk about this disease!) can be permanently damaged early on in the disease process of RRMS, the research is validating, not only that EARLY DETECTION AND TREATMENT IS NECESSARY, but CONTROLLING RELAPSE INFLAMMATION may save brain tissue down the road (i.e., steroids, ABC's, etc.).

As far as the newer discovery of damage in the grey matter of the brain with MS, all I can say is THIS cannot be a "good thing"! The grey matter is primarily responsible for higher order processing like reasoning. You know, those functions of our brains that separate us from the apes?!? And with undetected and untreated damage occurring here now, too, it's no wonder those of us with MS have such a hard time explaining our symptoms to our doctors!!!
If you don't believe me or simply need to read the article yourself (because you CAN, even without being enrolled in the research project), go to . The article and ALL of the articles provided by NARCOMS quarterly magazine are at this site...don't be alarmed when you see the "United Spinal Association" in big letters on this site...we're all just ONE BIG HAPPY FAMILY!
Happy...or should I say, "not unpleasant" reading...


harkoo said...

I have had MS for 20 years--was given betaseron 8 years ago-before that just prednisone for attacks. I have enrolled in the Narcoms Study also and read the same newsletter Linda refers to. It is no surprise to me that after a very light case of MS for years, it took just several stressful events to put me into a w/c. And why my mind feels like cotton candy at times. You are all lucky you at least have the chance to start out taking the new drug regimes from the outset of your diagnosis.



Yes, I agree...there is probably no better time to have a diagnosis of MS than least for the newly diagnosed.

What do you think of the questions on the NARCOMS surveys? Sometimes on a few of them, I think they miss the boat...but over all, I am pleased with their efforts.


Peej said...

I get the magazine as well though I hadn't read this one yet. The article you quoted sounded so reasonable to me that I had to go and read it for myself. At the end of it I experienced a "DUH!" moment... a "well dayum! That makes perfect sense" kind of thing.

Think about it... why do the majority of us go from RR to SP like clockwork? They say it averages out to be about 10 years. Can it be that SP is what is left after all those stealth lesions are done with us? Sounds about right to me....

And Primary Progressive MS... Why does it look and act so different from "normal" MS? Could it be that the bulk of the lesions are in the gray matter rather than the white (or whatever is opposite most RR/SP MS club members)? I'd love to hear more about this new development. It really has me curious. :)

Welcome back from vacation! Sounds like you had a great time.




And welcome back to YOU, too! How are you recovering these days? It's been a bit "lonely" with your relapse going on...I'm hoping the typing fingers are improving everyday.

Yep, I think there's a hella lot NO ONE knows about MS...this article sounds excitingly encouraging...


Peej said...

You're right, and we may never know everything about this disease.

This article however may have just explained why I've developed all the symptoms I have even though the dr says I shouldn't have them based on the few lesions (3) we can find on the MRIs and their general locations. It's been a complete mystery up to now.

Believe me, it was lonely being out of touch too. I miss all of you (even Mel) when I don't get online... Hmmm....maybe I need one of your co-workers (Massachusetts version, of course) to do an eval on ME! LOL!

I'm better thanks. Hands aren't spasming up as much lately (knocking wood it'll stay that way) though my feet/calves aren't giving up quite as easily. The hands are new though I've been dealing with the feet for years... Anyway, I just haven't been a lot of laughs lately, y'know? I try to stay out of normal (ha!) society when I'm sleep deprived and bitchy. :)

Hope to see you online soon. I've missed our chats. :)



So glad to hear you are somewhat improved! Although missing Mel makes me question whether or not the MS has finally eaten your brain! LOL

Yeah, I agree...there's a hellofalot "they" don't know about MS...maybe this recent discovery will bring us some answers?