People born with MS
Posted: Thu Jul 01, 2004 6:21 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
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