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Old 04-24-2008, 12:07 PM
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Rissa_TX Rissa_TX is offline
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Join Date: Apr 2008
Location: Austin, Texas
Posts: 39
15 yr Member
Rissa_TX Rissa_TX is offline
Junior Member
Rissa_TX's Avatar
 
Join Date: Apr 2008
Location: Austin, Texas
Posts: 39
15 yr Member
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Quote:
Originally Posted by freeinhou View Post
Hi Rissa -

Welcome to the board! Sorry ya gotta be here, but there's a wealth of info here.

As far as what treatment to go on, well, I'm not gonna be of any help. I don't take anything for MS. I followed the trials very, very closely in the late 80's and early 90's. The results during the trials were not all that impressive (sorry). When beta 1b got approved by the FDA in 1993, we (a group of us with MS) were kinda surprised.

Ok, I guess an explanation is in order... 1b = betaseron. Beta 1a = avonex/rebif. COPII = copaxone. I think Tysabri is a monoclonal antibody. There were ~ 30 drugs in trials in the early 90's. The CRAB's were roughly equally effective. Dr. Ted Yednock's work with monoclonal antibodies seemed to be the most promising. Somebody once told me the TY in Tysabri stands for Ted Yednock. If true, then I guess I'd lean toward this.

I did get scared when my lesion count increased dramatically in 2003. I actually took copaxone for a couple of weeks...

Now the really good news. I was dx'ed with MS at the age of 30, in 1988. No mystery here - I woke up one morning with ON and boom. I had MS. I still live/work/play a relatively normal life. MS is not a problem. Health related issues due to smoking, however, is another story... If ya want to, you might catch a glimpse of me on TV next month on the NASA channel. I'm one of the mission managers for the next shuttle flight (launch 5/31).

Which brings up the heat issue. Yes, I'm in Houston. I have no issues with heat. It bothers me, but it bothers my wife more, and she don't got MS. We were living in Toledo, OH when I got dx'ed. We moved right away to Miami, FL. I had to get as far away from Toledo as I could because a dx back then was career ending (nuclear power plant engineer). So I've lived in Miami and Houston ever since the dx. And I don't like cold weather any more.

Lesions? I had over 30 in 2003. I'm actually seeing a neurologist next week so I may get an MRI - I have a nerve issue which I don't think is related to MS.

I find myself in Austin every April. I work the MS150 Houston-Austin thing as a volunteer every year except this year (I had to get a few aneurysms repaired - smoking related). I actually did a few designs on federal buildings and bus facilities in the Austin area prior to taking a job at NASA (I'm a mechanical/nuclear engineer).

If you're ever in the Houston area and want a behind the scenes tour of the Johnson space center, let me know. I'll even show you where the aliens are...

Tom

Thank you all again. The info that's been provided here faaaar surpasses the info my doc gave me. I think I've made my decision to start on Avonex. Call me vain, but I have a hard time swallowing the "dents" that come with Copaxone treatment. I guess I'll start on Avonex, and if it makes me unbearably sick, I can fall back on Copaxone. I do really want to treat this in a preventative way... the longer that I can live an active life, the better this whole "MS thing" sounds. If I can do anything to prolong that... I'm all for it. I'm also looking into holistic treatment (not to replace conventional treatment, but to supplement it). Maybe accupuncture, or diet. I've heard a lot of good things about an herb called TMG from my grandmother. She had a bunch of spots on her brain MRI a couple of years ago, due to mini-strokes. She'd began taking TMG and doing yoga, and her follow up MRI was clear of the spots. The doc actually used the word "miracle." Not sure what that means for MS spots, but it may not hurt to try... Who knows, maybe I'm grasping at straws here.
Oh, and if I'm ever in Houston, I'm totally taking you up on the alien tour of the Johnson Space Center. Haha!
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~Carisa~

Planning to be a "glass half full" kind of gal...
just as soon as I get my head around this.

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