Thank you!

Back in 1995 I was diagnosed with MS. I was born & raised in a small town in Pennsylvania. I went back for my 25th HS reunion, nothing unusual except a classmate I found also has MS plus a girl who graduated 1 year ahead of me. In 2001 I went back to another reunion and find that 4 more classmates have this disease. It seems to me that this is higher than the national average as this is a really small town and I had maybe 129 kids in my graduating class.

Could you please steer me in the direction of someone who might be interested in looking into this? I can't help but feel that we may have all been exposed to something. And I don't know if there are any more in town that have MS. These are mostly within my graduating class and a classmate has gone down real quickly. If you know of anyone doing research in this area, could you please pass this on...I am hoping someone will look into this and it may help with research someday.

Thank you for reading this.

Some disease clusters will inevitably occur on a random or chance basis because you have so many communities, there is a bell shaped curve in the incidence of any disease and some communities are inevitably going to be on the high end of this bell curve. Many clusters upon inspection turn out to be erroneous. All those cases of MS oftentimes turn out not to be MS. You might contact your MS society and also any University MS Center. Someone might be interested in looking at your cluster

Subject: severe dizziness

I was hoping you could give some me some direction. I broke my C-1 in 1997 since then when turning by head in certain positions, like to the left when doing sit-ups or yesterday I had been sitting in a chair and tilted my head back to talk to someone and it felt like I lost control-I got severely dizzy like never before, I sweat profusely, and co-worker said I was red faced and my eyes looked strange-I think I have may have been out for a few seconds. I had a cat scan done-no problems were noted-what should my next step be? Any ideas what could be causing this.

WHAT DOES THIS MEAN?

Does it mean once you "have " MS your brain is going to shrink, whether or not you have symptomatic episodes? Because the "virus" is still working in your system? Whether you know it or not. Every time you have some kind of inflammation of an MS triggered response (even if asymptomatic), your brain will atrophy more, "shrink?" Are there any statictics of atrophy over time - like can you predict (or generalize) degree of atrophy over years? Through MRI's between years? What does it mean when your brain "atrophies?" What do you lose? Cognitively. or otherwise. Or is this not predicative, predictable? ( I understand how difficult this is to evaluate, let alone predict, still ...) How bad does "atrophy" have to do with your brain's functioning - (I know that means a lot, but) . Does it have to do with both muscular and sensory reactions (probably). But what does it have to do with cognitive functions, ie, thinking, judgement, "intellectual functions" etc. This is my biggest MS fear. Which doesn't seem to be talked about. Except forums, etc, saying, "50% of MS patients find some cognitive problems." Here's what I'm worried about. I could (maybe) deal with wheel chairs, vision problems, bladder, etc. But I am not sure at all how to deal with possibilites of not being "cognitive." I am enormously "cognitive." I am a writer. A reader. A thinker. I make my living doing that. I live my life doing that. If I am going to lose those abilities to do the things that define my life, I wanna know about it.I wanna know about it so I can plan the next years of my life. Simply, if I'm gonna get less able to function intellectually, I wanna know about it. I am writing to you to ask you for any informaton you might have on MS and brain atrophy and what that means. Anything you could forward to me re that syndrome would be very much appreciated. I was diagnosed with MS three years ago when I sought out a neurologist after a scary and puzzling moment of losing coordination, ability to control function in my right hand - yeah, couldn't sign my name, hand kinda went all over the page - woah! Thought I had maybe had a stroke - ready for that one since I'd recently nursed my mother through 3 months of repeated strokes and her final death. So neurologist puts me thro batch of tests, including an MRI with the contrast stuff they shoot you up with, which, as he said, was "lit up like a Christmas tree." Obviously, an "exacerbation." MRI also showed many old lesions in both hemispheres of my brain which obviously had been asymptomatic - I never had a clue previously that anything was wrong. I am "old" to be diagnosed with MS. 54 at diagnosis, neurologist was not figuring on MS due to my age, (but smart enough not to rule it out) and so apparantly I've maybe had it for many years as evidenced by number of "old" lesions on MRI). I have also, before this, been real "healthy" - no problems at any ordinary physical exams, no symptomatic problems, I run and do yoga regularly for 25 years, look, feel, act "younger" than my age due maybe to personality, good genes, exercise, and years of work in media, music, and advertising.

I opted not to go on any drug therapy at the initial diagnosis - Avonex, Betaseron, etc at the time - even though I must fairly say my neurologist recommended it. My rationale - excuse - was, hey, I travel a lot in foreign countries, and I don't want to have to deal with drugs I not only have to "shoot up ie, inject" but that have to be kept at controlled temperatures, etc. I was also taking the "crapshoot" as I called it - as I also dubbed the whole disease of MS - a crapshoot - who knows how it goes - that maybe I would never have another symptomatic MS response and life would be just fine.

So good news - no, I've never had another symptomatic experience of MS. My "disability," maybe as result of exacerbation that first started me going to the neurologist, seems to be a minimal loss of sense of balance - I cannot leap up and down stairs while running as I used to, I detect a certain hesitancy in "fine balance," ie, moving gracefully between tables in a restaurant, negotiating small, precise, movements which heretofore I maybe had put off as generally, ok, I'm kinda clumsy, not the most graceful chick on the planet. But there is definitely more a sense of this, and maybe just an awareness of this, now that I have the MS diagnosis. I have also been very aware of questioning myself re these feelings of imbalance - are they "real " or have I become afraid of leaping up and down those stairs, am I more "clumsy" or just hesitant. Dunno. Basically, gratefully, my stamina seems to be as usual - good. Older than most I hooked up traveling with, but never thought I held them back, didn't. But I opted out when I thought it looked particularily creepy re crumbly, non-leval, lethal scrambles up hillsides of shale. To be fair, that kinda thing was never my fave rave, scrambling up sharding hillsides, leaping between rocks to ford a Fu**ing stream. But maybe it was never a fave rave because instinctually I knew I couldn't do it? And why not? Can't everyone do that? I've had great stamina. As I say, run up and down hills here in LA 3 times a week, breathe and do yoga, eat well, take vitamins, etc.

Here I am asking you to reply to me with any information you guys have. I would be most appreciative. Other "symptom" I have felt, has not been recognized by my neurologist. I tell him I get "jangly" at times. Meaning, I feel a sense of - not exactly dizziness - but maybe closest I can say - to nervous physical (not nervous/psychological) sense of real physical "jangly -ness" - I sense myself feeling uptight and unsure (of balance, precision) and an actual sense of unusual tightness/real physical sense of undue exertion when I am doing normal things like putting on eye-liner - precise movements during which I feel a physical sense of "jangliness" - like I am not doing this naturally and I am aware of it, and I feel a real physical strain while I am doing it. It is very hard to explain, I understand. But I tell him, I feel it in the back of my neck - if I have to localize it. I feel a nervous tension that doesn't stop me from doing my task, but I feel a sense of having to combat some sense of this is tough, this is making you very tense, takes a lot of effort, concentration (not cognitive, but physical)etc. Not at all the way I have lived my life heretofore. Food, seems to aliviate this, as in eat something and you wlll feel better. And it seems to help. Or not (psychologically). And I have wondered if maybe I have some kind of adult onset diabetes Or something- ie like maybe there is another syndrome going on at the same time - hey, why not,eh? - altho regular physical exams have never red-flagged this. All I know is I feel "jangly" and even thos it's no big deal - what the heck is that? Is is MS-y? Even though my nerurologist says he doesn't know from this. I want information about brain atrophy and MS. About if there are even generalizations about which parts of your brain "atrophy" would effect? Is this a non productive search, as in, we can never tell which functions of your brain general atrophy would affect? I understand you may not be able to give information which might go beyond your responsible imperatives as a researcher and health care provider, or might in any way imperil your position. 

Cognitive functions are affected by MS, sometimes very little, sometimes by a lot. Functions is affected by the volume of brain experiencing inflammation and scarring as much as it is by brain atrophy. On the MRI scan you can also get a good idea of the volume of brain affected by looking at the T2 images. On those you are able to see what is called a "lesion burden". Also there is another MRI phenomenon, black holes.

Any process that affects enough of the volume of the brain, infection, strokes, aging, degenerative disease or MS, may cause dementia. The greatest amount of loss of mental function will correlate, LOOSELY with the amount of brain volume lost, whether this is due to the death of brain cells, or loss of axons. While MS had been thought of for a long time as primarily a disease of myelin as indeed it is, newer studies have shown that MS cuts axons as well. We don't know exactly what causes brain atrophy as it appears on the MRI scans of persons with MS. It's suspected that atrophy is mostly caused by axonal trans-section or destruction.

Brain atrophy(brain parenchymal fraction) is reduced by using Avonex and very likely by other agents as well, especially Betaseron and Rebif. T2 lesion volume is absolutely diminished by any of these three drugs. That is good news. IF you have a firm diagnosis of MS, and are as you describe yourself, still quite vigorous, you absolutely should be on treatment. No ifs and or buts, no excuses. You wrote me a long letter but I think you said that you are not on a medicine. Ifso I can't agree with you. Information on atrophy is readily available using any search engine. Google is my favorite. I just typed in brain atrophy and MS and got tons of information but it all boils down to the same conclusion. Best of luck. Do what's right.

-Chas Yanofsky