People born with MS

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People born with MS

Postby OddDuck » Thu Jul 01, 2004 7:21 am

Hi, folks!

I wanted to start a new thread in order to pose (perhaps) a couple of new thoughts and/or ask for feedback on the following:

How do any of these new theories/treatment options for MS relate to people who were actually born with MS active in their systems?

Let me explain. I know there are few of us out here, but there are some, and MS is being diagnosed more often lately in children as early as the age of 2 yrs. old.

I was born with MS active in my system. I started losing my legs by the time I was 3 yrs. old. The prediction at that time was that I would be in a wheelchair before my teen years, and might not survive past my 20s. That particular prediction did not change, either, until I realized "Hey! This is my 30th birthday! HAH!"

I have never known one single day of my life without MS. I've never been free of symptoms. I don't know what it might be like to not have MS (so therefore, luckily, I don't take MS that hard, because I don't really know for sure what I'm missing in the "normal" healthy world, so maybe that's a blessing in disguise). Anyway.....over the years, there have been many exciting "discoveries", which then soon after proved themselves to not be so exciting after all. Hence, my "caution" before getting too excited over new theories of causal relationships (plus not to mention the fact that none of them so far explain how some of us were just plain born with this.) Anyway, I have also never known anything but doctors, tests, new treatments, etc. etc. Never. I was always in and out of hospitals, etc., my whole life.

Their predictions way back in the day were correct in the one sense that by the time I had reached my 20s, I was in bad shape and declining fast. We tried everything! Until we stumbled onto the medication that helped me recover. And for a while it worked and perhaps as a fluke, preserved and regenerated my lost neurological functions.

Now.....again, 20 years later from the last reversal of my consistent progressive decline, I started rapidly declining again. It has always been a gradual decline, but after it reaches a certain point in longevity, it "seems" to suddenly speed up. So, again, I simply decided to try what worked for me before (by accident), but this time, I researched the "why" behind how it could possibly have done so (scientifically).

So, in any event, please pardon my apparent "skepticism" with new "causal" relationships with MS, because it's not really skepticism. It's just plain caution, after experiencing years of hope, and then dashed hope.

Hence, also my goal at attempting to help the minority MSers like myself.

Thanks for listening.

Deb
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Postby DawnsBrain » Thu Jul 01, 2004 9:32 am

How do any of these new theories/treatment options for MS relate to people who were actually born with MS active in their systems?

Deb,
First let me say I am glad you decided to stick around as I enjoy reading your posts.

I have never met a person that was born with MS active in their system and would it be safe to assume you are rare or once was rare as I understand there are more and more diseases becoming apparent in the very young in our population.

I am not all that certain new theories or treatment options for MS would do much for those that were born with MS active in their system. Quite possibly there could be research done on these type of MSer's that would truly answer the question if there is a "genetic" predisposition to this disease. It would be interesting to know if you have some of the same markers that I do in this disease since we both encountered the disease at very different ages in our lives...you at birth and me at 30 years of age.

I can understand your skepticisim as far as trtmt and theories go b/c you have lived this disease and know no other life without it and thus far, the research for viable treatment continues meeting with success and failures.
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Postby jicepf » Thu Jul 01, 2004 10:13 am

ms is this huge mystery for me. I can go back six generations on one side and 4 on the other, and there's never been any ms until I came along.

I am hopeful that someday (preferrably in my lifetime) people will be able to find out what causes it, and why.

And since there seem to be so many kinds of ms, I am beginning to think it's an umbrella diagnosis- various strains of a disease, some less toxic than others.

Thus typed, I am glad I found this site and enjoy reading people's posts.
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Postby DawnsBrain » Thu Jul 01, 2004 10:15 am

jicepf,
I also fit the category you describe. No MS in the family history until I came along. It is a mystery,isn't it.
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Postby OddDuck » Thu Jul 01, 2004 10:31 am

Have you guys heard about Dr. Lucchinetti's (from the Mayo - she studies under Dr. Moses Rodriguez) theories about there being (so far) four different patterns of MS? Two of them involve the immune system slightly, but two of them do not.

It's totally separate from the well-known "classifications" of MS, i.e. RRMS, SPMS, PPMS, etc. (which seem to sort of keep evolving a little as they go along).

Anyway, Dr. Lucchinetti's theories are pretty interesting.

I also am leaning toward that "umbrella" idea about MS, and Dr. Lucchinetti's findings tend to go along with that, also.

Deb
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Postby jazzcat » Thu Jul 22, 2004 11:47 am

Hello all,

I find this strand and your posts sooooooooo interesting. I was wondering, though, Deb, what you meant by "umbrella" ideas. I haven't heard that before. Could you please explain?

Thanks!
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Postby OddDuck » Thu Jul 22, 2004 12:15 pm

Jazzcat:

It's like jicepf originally stated:

"And since there seem to be so many kinds of ms, I am beginning to think it's an umbrella diagnosis- various strains of a disease, some less toxic than others. "

In other words, there are more than one actual diseases being lumped into one "name" and they are all being called "MS", when in actuality there are more than one actual kinds or patterns of the disease which probably require totally different types of treatment and involve totally separate disease processes and causes.

All of these separate diseases are just being lumped (like under an umbrella) into one name, when they are all really very different from each other, but all being called MS.

Deb
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