Tysabri Bound!

HRWeenie · Post by **HRWeenie** » Fri Dec 17, 2004 12:58 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.

Post by **Arron** » Fri Dec 17, 2004 1:32 pm

It is wonderful to have you with us... a very warm welcome to you!

Stoli · Post by **Stoli** » Thu Jan 06, 2005 8:54 pm

Right leg foot drop ??? - ME TOO

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 !

HRWeenie · Post by **HRWeenie** » Mon Jan 17, 2005 2:48 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 --

Stoli · Post by **Stoli** » Mon Jan 17, 2005 7:41 pm

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