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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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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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05-07-2013, 09:55 PM | #352 | |||
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In Remembrance
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So sorry Lizzy, I hope it all turns out for the best for you..
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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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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05-17-2013, 02:56 PM | #354 | |||
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#40 going in my vein now.
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On Tysabri and love it. . |
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05-21-2013, 03:36 PM | #355 | ||
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last Tues was #81
Linda |
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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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On Tysabri and love it. . |
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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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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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On Tysabri and love it. . |
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05-30-2013, 04:01 AM | #359 | |||
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Magnate
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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? . 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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05-30-2013, 11:22 AM | #360 | |||
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In Remembrance
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Happy for you.....
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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"Thanks for this!" says: | Grammie 2 3 (06-01-2013), Natalie8 (05-30-2013) |
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