Home Menu

Site Navigation




advertisement
NeuroTalk Support Groups > > >

Tysabri Check In, Support and Information Part Three

Reply
Page 36 of 56 « First 263435 36 373846 Last »
 
Thread Tools Display Modes
Old 05-07-2013, 09:11 PM #351
DizzyLizzy's Avatar
DizzyLizzy DizzyLizzy is offline
Member
  
Join Date: Dec 2008
Location: Minnesota
Posts: 222
15 yr Member
DizzyLizzy DizzyLizzy is offline
Member
DizzyLizzy's Avatar
 
Join Date: Dec 2008
Location: Minnesota
Posts: 222
15 yr Member
Default
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...
__________________


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.
DizzyLizzy is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Grammie 2 3 (05-10-2013), Natalie8 (05-09-2013), Riverwild (05-10-2013), SallyC (05-07-2013)

advertisement
Old 05-07-2013, 09:55 PM #352
SallyC's Avatar
SallyC SallyC is offline
In Remembrance
  
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
SallyC SallyC is offline
In Remembrance
SallyC's Avatar
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
Default
So sorry Lizzy, I hope it all turns out for the best for you..
__________________
~Love, Sally
.





"The best way out is always through". Robert Frost



~If The World Didn't Suck, We Would All Fall Off~
SallyC is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Grammie 2 3 (05-10-2013), Natalie8 (05-09-2013), Riverwild (05-10-2013)
Old 05-08-2013, 08:28 PM #353
DizzyLizzy's Avatar
DizzyLizzy DizzyLizzy is offline
Member
  
Join Date: Dec 2008
Location: Minnesota
Posts: 222
15 yr Member
DizzyLizzy DizzyLizzy is offline
Member
DizzyLizzy's Avatar
 
Join Date: Dec 2008
Location: Minnesota
Posts: 222
15 yr Member
Default
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...
__________________


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.
DizzyLizzy is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Grammie 2 3 (05-10-2013), Natalie8 (05-09-2013), Riverwild (05-10-2013), SallyC (05-08-2013)
Old 05-17-2013, 02:56 PM #354
Natalie8's Avatar
Natalie8 Natalie8 is offline
Member
  
Join Date: Apr 2008
Posts: 900
15 yr Member
Natalie8 Natalie8 is offline
Member
Natalie8's Avatar
 
Join Date: Apr 2008
Posts: 900
15 yr Member
Default
#40 going in my vein now.
__________________
On Tysabri and love it.
.
Natalie8 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Grammie 2 3 (05-21-2013), Riverwild (05-30-2013), SallyC (05-17-2013)
Old 05-21-2013, 03:36 PM #355
Grammie 2 3 Grammie 2 3 is offline
Member
  
Join Date: Aug 2007
Location: Colorado
Posts: 374
15 yr Member
Grammie 2 3 Grammie 2 3 is offline
Member
 
Join Date: Aug 2007
Location: Colorado
Posts: 374
15 yr Member
Default
last Tues was #81
Linda
Grammie 2 3 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Natalie8 (05-22-2013), Riverwild (05-30-2013), SallyC (05-21-2013)
Old 05-22-2013, 12:36 AM #356
Natalie8's Avatar
Natalie8 Natalie8 is offline
Member
  
Join Date: Apr 2008
Posts: 900
15 yr Member
Natalie8 Natalie8 is offline
Member
Natalie8's Avatar
 
Join Date: Apr 2008
Posts: 900
15 yr Member
Default
Amy, did the steroids help your relapse? How are you doing? Still staying on Tysabri? Hope you are feeling better.
__________________
On Tysabri and love it.
.
Natalie8 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DizzyLizzy (05-22-2013), Grammie 2 3 (05-24-2013), Riverwild (05-30-2013)
Old 05-22-2013, 11:46 AM #357
DizzyLizzy's Avatar
DizzyLizzy DizzyLizzy is offline
Member
  
Join Date: Dec 2008
Location: Minnesota
Posts: 222
15 yr Member
DizzyLizzy DizzyLizzy is offline
Member
DizzyLizzy's Avatar
 
Join Date: Dec 2008
Location: Minnesota
Posts: 222
15 yr Member
Default
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
DizzyLizzy is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Grammie 2 3 (05-24-2013), Natalie8 (05-23-2013), Riverwild (05-30-2013), SallyC (05-22-2013)
Old 05-23-2013, 12:54 AM #358
Natalie8's Avatar
Natalie8 Natalie8 is offline
Member
  
Join Date: Apr 2008
Posts: 900
15 yr Member
Natalie8 Natalie8 is offline
Member
Natalie8's Avatar
 
Join Date: Apr 2008
Posts: 900
15 yr Member
Default
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!
__________________
On Tysabri and love it.
.
Natalie8 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DizzyLizzy (05-23-2013), Grammie 2 3 (05-24-2013), Riverwild (05-30-2013), SallyC (05-23-2013)
Old 05-30-2013, 04:01 AM #359
Riverwild's Avatar
Riverwild Riverwild is offline
Magnate
  
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Riverwild Riverwild is offline
Magnate
Riverwild's Avatar
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Default
#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!
__________________
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!
.
Riverwild is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DizzyLizzy (07-25-2013), Grammie 2 3 (06-01-2013), Natalie8 (05-30-2013), SallyC (05-30-2013)
Old 05-30-2013, 11:22 AM #360
SallyC's Avatar
SallyC SallyC is offline
In Remembrance
  
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
SallyC SallyC is offline
In Remembrance
SallyC's Avatar
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
Default
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.....
__________________
~Love, Sally
.





"The best way out is always through". Robert Frost



~If The World Didn't Suck, We Would All Fall Off~
SallyC is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Grammie 2 3 (06-01-2013), Natalie8 (05-30-2013)
Reply
Page 36 of 56 « First 263435 36 373846 Last »

« Previous Thread | Next Thread »

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
LDN Information & Check-in 2 SallyC Multiple Sclerosis 827 07-07-2017 09:46 PM
Tysabri Information and Check In part 2 ewizabeth Multiple Sclerosis 745 01-11-2011 09:17 PM
Tysabri Information & Check In Curious Multiple Sclerosis 988 04-16-2009 05:09 PM
LDN Information & Check In SallyC Multiple Sclerosis 844 01-15-2009 11:40 AM
Looking to Share Information & Support catluvr123 New Member Introductions 11 05-07-2008 08:45 AM


All times are GMT -5. The time now is 01:00 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

All posts copyright their original authors.

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.

Always consult your doctor before trying anything you read here.

Home