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 http://www.narcoms.com/ ). 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 areas...it'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 arm...so 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 significant...it 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 http://www.unitedspinal.org/publications/msqr/ . 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...