Tysabri Bound!

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Tysabri Bound!

Postby HRWeenie » Fri Dec 17, 2004 1:58 pm

Hi -- I was just diagnosed with RRMS last week & stumbled (no pun intended) upon this site. I'm looking for some book/reading suggestions so I can learn more.

I'm 42 years old, female, married with one pre-teen daughter. On the executive team for a fast-growing company - have to travel a lot. Symptoms started 6 weeks ago with right leg numbness while I was working out. Blew it off as a pinched nerve. Then left leg weakness & foot drop a couple of days later. Family doc new it was central nervous system immediately upon exam (I'm lucky!) so got the ol' MRI & spinal tap & referral to a neuro. One small inactive lesion in brain (no symptoms) and one on thorasic spine. No others -- looks like I'm at the beginning. Am almost totally back to "normal" (without any drugs/cortizone) - just leg fatigue at the end of the day & occasion hives (on the bottom of my feet!). Have never had anything even resembling a symptom before. No family history. Had mumps as a toddler & mono as a teen.

Haven't started any drug therapy yet - my neuro is locating an infusion center cuz I'm going straight to Tysabri (do not pass "Go" or Avonex, Copaxone, etc.) My goal is drugs by Christmas! I can stand anything for a couple of hours a month....

Had a lukewarm experience with my local neuro (his diploma had dinosaur doo-doo on it -- I tried to crack a joke that at least my MRI confirmed I had a brain -- he didn't even crack a smile - LIGHTEN UP!) and feel much better after visiting the MS Clinic at Univ of Michigan. (Go Blue!) What a difference a specialist makes! I feel much more optimistic about my future, my ability to keep up at work, etc. I'm not in denial - just flipping MS the bird.

Thanks to all of you for your posts & insights -- they really help out a newbie like me! I'll post my Tysabri infusion experience as soon as it happens.
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Postby Arron » Fri Dec 17, 2004 2:32 pm

It is wonderful to have you with us... a very warm welcome to you!
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby Stoli » Thu Jan 06, 2005 9:54 pm

Right leg foot drop ??? - ME TOO 8O

I tripped over a couple of times whilst trekking in Nepal in 2000- it steadily got worse and I was dxd in 02. :? I've been on copaxone since. :? On a bad day I can trip over a flat piece of paper! Left leg is just fine - go figure.

Tysabri isn't available here yet - I hope all goes well for you. Let me know how the Tysabri works for you.

When I was dxd I read heaps of MS books (info junkie) but the only book i would recommend is called "Taking Control of Multiple Sclerosis" by Prof George Jelinek MD. I know that it was available on the UK Amazon site, perhaps it might be available on the US site by now ?
Best Wishes
Stoli

I think we should rename your neuro to Mr Personality ! :wink:
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Postby HRWeenie » Mon Jan 17, 2005 3:48 pm

Stoli -- Thanks for the book suggestion -- I ordered it because I'm an info junkie too. I apologize for waiting so long to respond to your post. I've been travelling & I hit what seems like a brick wall at the end of each day. I use all of my energy at work. I guess I'm still trying to figure out what my limits are & when I need to rest. I feel like I can still "gut" through this MS thing until my body reminds me otherwise. Live & learn...

I have my first Tysabri infusion the day after tomorrow. I'll make sure to post my experience on the Tysabri users' forum. I'm nervous but excited to be doing "something." I haven't taken anything stronger than cough medicine for years so this should be interesting. Take care --
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Postby Stoli » Mon Jan 17, 2005 8:41 pm

when you've read the book let me know what you think. :D
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