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Tysabri Check In, Support and Information Part Three

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Old 01-28-2013, 03:09 PM #331
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It's a wonder TY doesn't pay you. You are a walking commercial for them, River.

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Last edited by SallyC; 01-29-2013 at 01:46 PM.
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Old 02-05-2013, 12:43 AM #332
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#38 today! I've been on Tysabri now for 4 1/2 years. Wow. This drug has been a miracle. No relapses. No progression. I have an almost normal life (knock on wood!!)

I got my infusion at the 6.5 week mark instead of the 8 week mark because I leave for Europe on Wed. for awhile. See you when I get back!
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Old 02-08-2013, 07:29 AM #333
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Hi everyone

I have posted about my upper respiratory tract infection from hell and the lovely doc who told me I had a 'mild virus, go home and take a cold tablet, because Ty wouldn't interfere with my immunue system'.

I finally got in to see real doctor (the down-side of living in semi-outback Australia - you just can't get in to see a doctor) and he gave me a prescription for antibiotics (finally - although normally, I would never choose to do this). This was at the end of two weeks of panic after experiencing the worst MS fatigue, weakness down my left side, and emotional cr@p ever

I booked in to get my next infusion today, and told the Nurse Unit Manager that I am now two weeks overdue for my infusion, and why. She was horrified, and is going to send a 'dirty letter' and information sheet to make sure that doctors' who come in to the ER here know the facts with Ty. When I told her, she said to me 'did you suggest that he google Tysabri and PML?'

Small gain? Yes? But it made me happy (and cry after all the times I have felt like a neurotic housewife/hypochondriac) anyway.

Things are looking up now, feeling much better.

Cheers

Lyn
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Old 03-23-2013, 06:58 PM #334
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I had my 79th infusion yesterday
Enrolled in a study that Dr Vollmer is participating in re pml/Ty/blood/urine.
Then went to Quest labs to get a jvc test-here's to staying negative !!
Hope all are doing well
Linda
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Old 03-26-2013, 04:17 AM #335
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Quote:
Originally Posted by Grammie 2 3 View Post
I had my 79th infusion yesterday
Enrolled in a study that Dr Vollmer is participating in re pml/Ty/blood/urine.
Then went to Quest labs to get a jvc test-here's to staying negative !!
Hope all are doing well
Linda
Right there with you again @ 77!
Life is good! Now if it would only STOP snowing!
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


.
I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
.

Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
.
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Old 03-29-2013, 02:43 PM #336
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Just had #39 and keep plugging along!
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Old 04-17-2013, 03:05 AM #337
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78!
We're freakin' rock stars!
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


.
I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
.

Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
.
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Old 04-20-2013, 01:00 AM #338
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We are rock stars! Tysabri should pay us for being ideal patients. .

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On Tysabri and love it.
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Old 04-21-2013, 06:23 PM #339
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Yep, me too ..#80 last Tues
Linda
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Old 04-22-2013, 10:11 AM #340
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Do you guys, doing so well on Tysabri, feel cured as if your are
sorta cured. Do you walk, run, talk and think normally now?

Splain Lucy..
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~Love, Sally
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"The best way out is always through". Robert Frost



~If The World Didn't Suck, We Would All Fall Off~
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