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Tysabri Check In, Support and Information Part Three

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Old 05-30-2013, 04:01 AM #1
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#79 done the 16th. Starting my seventh year on Tysabri....
JC AB test done the same day, waiting on results, expecting another neg. becaue I deserve it!

Life is good!
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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?


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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Tysabri withdrawn from market 02/28/05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
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Negative for JC virus antibodies!
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I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
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Old 05-30-2013, 11:22 AM #2
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Originally Posted by Riverwild View Post
#79 done the 16th. Starting my seventh year on Tysabri....
JC AB test done the same day, waiting on results, expecting another neg. becaue I deserve it!

Life is good!
Happy for you.....
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Old 06-01-2013, 08:02 AM #3
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So.....

Dumb question, if you can have a false negative JCV test, can you have a false positive one?

I only had one test, and that was positive and I am still on Ty - have been for nearly four years. Working well, don't want to change, don't want to go on orals (can't see the point if you can still get PML when you are on them if you used to use Ty). Wondering if I should ask for a repeat test if it is possible that it may be wrong.

Lyn
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Old 06-01-2013, 08:29 PM #4
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Hi Lynn, I think it was 10/10 I had a positive jcv test. Then 1 yr later my test was negative. I have had a couple test at the 6 mth interval done at Quest-negative and close to the correct month for the stratify year test in 2012 - NEGATIVE!! I have been on Tysabri for 6 1/2 years

So yes, it can happen
Linda
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Old 07-17-2013, 01:05 AM #5
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Had #41 last Thurs. Got into a spat with the temporary nurse trying to explain that my infusion runs more slowly. Finally I had to say "Look, it's my body, I've been taking this drug for 5 years and know how I feel when it runs quickly, and please call my doctor's office to confirm the rate it's been running at for the past 3 1/2 years." Jeez. I HATE it when medical caregivers won't listen to you closely!
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Old 06-01-2013, 08:35 PM #6
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Quote:
Originally Posted by Riverwild View Post
#79 done the 16th. Starting my seventh year on Tysabri....
JC AB test done the same day, waiting on results, expecting another neg. becaue I deserve it!

Life is good!
You do deserve it!!
Happy 7th year I'm now 8 months into mine
Linda
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Old 06-03-2013, 12:38 AM #7
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You do deserve it!!
Happy 7th year I'm now 8 months into mine
Linda
I will be at the 5 year mark in July. Does that mean I'm entering my sixth year? Not sure how it works.
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Old 06-05-2013, 10:00 PM #8
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I will be at the 5 year mark in July. Does that mean I'm entering my sixth year? Not sure how it works.
I started 10/06-so 9/07 I completed 1 yr and 10/07 I started my 2nd year. So, 9/12 I completed 6 years and 10/12 I started year 7.
Natalie, I hope I made sense
Linda
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Old 06-06-2013, 02:13 AM #9
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I started 10/06-so 9/07 I completed 1 yr and 10/07 I started my 2nd year. So, 9/12 I completed 6 years and 10/12 I started year 7.
Natalie, I hope I made sense
Linda
Yes Linda, that makes sense! I started in 07/08. So this Aug will be the start of my 6th year. It's so surreal, the pre JCV antibody test world when no really knew what was going on. I remember a month after I started there were the first 2 PML cases post clinical trial. I was so freaked out and wondered if this was the right choice.

But it totally is the right choice!

Can I just reiterate once again how much I LOVE this drug? I've had no relapses, no progression (knock on wood, knock on wood, knock on wood!--I always have to say that). It has allowed me to keep working with little effect on my job because of minimal side effects.
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Old 06-12-2013, 10:30 AM #10
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Yesterday was my 82nd infusion slight headache but, I was good to go.
The eye therapy I had (and do) for balance has kept me from falling-one fall in 13months ! YEA!!
Hope all are well
Linda
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