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Tysabri Check In, Support and Information Part Three

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Old 05-07-2013, 09:11 PM #351
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Well I am officially having my first 'relapse' since starting on Tysabri on Jan 15, 2010. Had an MRI last Wed and got a phone call on Friday afternoon telling me that I have 4 new, active lesions . I see her for a consult tomorrow and also have an infusion scheduled 30 minutes after that (#41)

I have no idea what to expect tomorrow. I guess I have just become so accustomed to being stable on Ty, that I honestly have not considered being off of it.

I am having little twinges of panic tonight...
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DO WHAT makes you happy, Be with WHO makes you smile, Laugh as much as you breathe & LOVE as LONG as you LIVE



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July 2006- First significant SXs, suspect it started back in mid 1990's
1/21/09 - Positive MS Dx
2/17/09 - 2nd Positive MS Dx
4/2/09 - MS Dx 3rd Neuro - finally found the Dr. who has the characteristics I was looking for
.

10/8/09-optic neuritis flair, Cog Fog, chronic headaches
5/4/09 - 12/15/09 Copaxone
1/15/2010 - First Tysabri Infusion - 3/25/16 - Last Tysabri Infusion
3/3/16 - signed the documents to start the Lemtrada journey
4/25/16. Lemtrada begins.
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Old 05-07-2013, 09:55 PM #352
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So sorry Lizzy, I hope it all turns out for the best for you..
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Old 05-08-2013, 08:28 PM #353
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I saw the Dr. today and she prescribed 5 days of IV Solu-Medrol, and I started that today. She postponed my Tysabri for two weeks and does think I should continue with it and monitor with MRI every 6 months.

She also ordered running blood work quarterly, a follow up with her nurse in 3 months and a follow up with her in 4 months.

Since I am still feeling like I want a nap and I'm going to take advantage of that since I may not sleeping so well in the next coming days

i am really hoping this does the trick...
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Amy



DO WHAT makes you happy, Be with WHO makes you smile, Laugh as much as you breathe & LOVE as LONG as you LIVE



.

July 2006- First significant SXs, suspect it started back in mid 1990's
1/21/09 - Positive MS Dx
2/17/09 - 2nd Positive MS Dx
4/2/09 - MS Dx 3rd Neuro - finally found the Dr. who has the characteristics I was looking for
.

10/8/09-optic neuritis flair, Cog Fog, chronic headaches
5/4/09 - 12/15/09 Copaxone
1/15/2010 - First Tysabri Infusion - 3/25/16 - Last Tysabri Infusion
3/3/16 - signed the documents to start the Lemtrada journey
4/25/16. Lemtrada begins.
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Old 05-17-2013, 02:56 PM #354
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#40 going in my vein now.
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Old 05-21-2013, 03:36 PM #355
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last Tues was #81
Linda
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Old 05-22-2013, 12:36 AM #356
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Amy, did the steroids help your relapse? How are you doing? Still staying on Tysabri? Hope you are feeling better.
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Old 05-22-2013, 11:46 AM #357
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Yes, the steroids have helped me quite a bit Natalie, thank you for asking.

My mood is better which is helping me to get out of the house more! I am trying to get out every day, even if it is to walk around my building. I actually went out both Saturday and Sunday! I met up with @ 20 high school friends on Sat night and we met at a local bar/restaurant and listened to really bad karaoke And then on Sunday, I took my daughter to see the 'Rock of Ages' musical at the Orpheum Theater and then I went to a high school dance performance that evening! I could not believe that I was able to keep up! It felt wonderful!

I am going to stay on Tysabri, especially since I am still testing negative. I'm actually getting my infusion right now, it was postponed for a couple of weeks.

Amy
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Old 05-23-2013, 12:54 AM #358
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Yeah! I'm still negative for the JC virus even on the super specific NEW test. I was a little worried I would sero-convert. I think this may be the 4th or 5th test now. 6 more months of Tysabri guaranteed! Woohoo!
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Old 05-30-2013, 04:01 AM #359
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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
.

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 05-30-2013, 11:22 AM #360
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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!
Happy for you.....
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~If The World Didn't Suck, We Would All Fall Off~
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