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Old 04-23-2008, 05:29 PM #11
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Quote:
Originally Posted by Rissa_TX View Post
Thanks so much for your insight. This is just such a strange trip. Now I keep convincing myself that every single weird sensation that I have has to do with MS. I need to quit it.
One other question I have is this - does heat actually cause flare ups, or does it just make old flare ups feel worse? My doc says the former, but all literature that I've read says the latter... I really like being outdoors, and I live in Texas. Not looking forward to trading my mountain bike for a stationary one...

I had a fever from an infection in my mouth (had dental work, got the infection after) earlier this month or at the end of last month.

The fever, I guess, made my right foot really numb. Like the dentist stabbed me in the foot with the needle full of novocaine numb. Went to my neuro, because I thought it was a new symptom. My neuro told me that I needed to learn the difference between pseudo-exacerbation and an actual exacerbation. (I thought I knew this already)

He said because I'd told him I had numbness in my feet once, that this was a pseudo-ex because I'd had numbness in my feet before. I have had numbness in my feet before, but never anything to the extent that I had when I saw him. I couldnt feel my toes. Before, it had always just been a light, tingly numb sensation, but I could still feel stuff. This was a near total numbness.

This was at the end of March, or the beginning of April. Saw the Neuro on the first (un-Happy April Fool's Day for me!) and he said for me to ride it out since he thought it was a pseudo and not a real exacerbation. I'm thinking he was wrong. Because here I am, end of the month, no fever, and my foot has still had some numbness. I can tell it's resolving itself somewhat, but it's taken weeks for it to get to that point. Yesterday it was pretty numb. Today it's better than it's been.

I think if it had been a pseudo, it would have gone away after the fever had resolved.

It's starting to get warm where I live (Nebraska) so I guess I'll know pretty soon if I'm heat sensitive or not. I think I am somewhat, but just not sure how sensitive.
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Old 04-23-2008, 07:16 PM #12
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Welcome aboard Rissa ! I just wanted to let you know that there are few of us that don't have problems from the heat . I stay out of direct sun but enjoy sitting on my patio even when it's 90 degrees! I don't have any pseudo-exacerbtions from it as far as I can tell. I am definitely more affected by cold weather. Maybe you'll be an odd ball like me !!
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Rissa_TX (04-23-2008)
Old 04-23-2008, 11:45 PM #13
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Welcome to the board. You got questions, we got answers!

I chose Avonex just cause I didn't want to inject myself any more than once a week.

As far as the heat goes, I think it just makes old symptons come back temporarily. Get back in the cool temp and they go away. Check out all the cooling gear that you can buy. There is one of the MS organizations that have a free cooling program. Well it's realy a rental but you get it for life. You get a vest and several other things. I wear my vest when I go places to like the zoo or an amuzement park. If I want to play outside with my grandkids I might wear it or just keep plenty of ice cold water with me. My neuro also told me that taking Tylenal before doing something in the heat helps some people because it keeps down your core temp. I also gave myself a generous Christmas present a couple of years ago and put an automatic starter on my car. So I can turn it on before I get out to it and the AC is already on. Get a written statemnt from your doc that says AC is medically necessary and then give that to your local gas/electric company and they can put you on a priority list if the power goes out.

Good luck with everything!
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Old 04-24-2008, 07:08 AM #14
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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
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Old 04-24-2008, 12:07 PM #15
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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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Old 04-24-2008, 12:41 PM #16
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Rissa!
Rissarissarissa!

One big, warm, tight, hug, handshake and howdy, moose-size official type welcome. This place is amazing!

You've already got some great info from our members. Try not to let it all overwhelm you. Small doses, if you will. There's some info on the web on MS that is really out-of-left-field type stuff and from time to time even 'experts' will contradict each other... and themselves. All I can add is;

You are not alone.
You are one of us.
And we are here to help.
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