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Tysabri Check In, Support and Information Part Three

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Unread 01-11-2011, 10:13 PM   #1
Riverwild
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Arrow Tysabri Check In, Support and Information Part Three

Tysabri Check In, Support and Information Thread, Part Three!

Come on in and set awhile and let us know how you are doing, ask questions, tell your story or just check out the library!
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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Tysabri withdrawn from market 02/28/05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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Chemar (01-11-2011), Grammie 2 3 (01-12-2011), Natalie8 (01-12-2011), SallyC (01-11-2011), shayna (01-12-2011)
Unread 01-11-2011, 10:19 PM   #2
Chemar
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Thanks for starting the new thread Riverwild

Just a reminder to everyone that this thread is for support for those who are on Tysabri, and for sharing information for those who are considering Tysabri.
Any other discussions related to Tysabri should please move to new threads on the MS forum, so that this sticky thread remains dedicated to just being for support and information, rather than debate.
Thanks!
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"Thanks for this!" says:
Grammie 2 3 (01-12-2011), Natalie8 (01-12-2011), Riverwild (01-11-2011), shayna (01-12-2011)
Unread 01-12-2011, 01:27 AM   #3
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Wow! I can't believe we are on Part 3! Thanks to all for making this Tysabri thread supportive over the years. It's also hard for me to believe I've been on this drug for exactly 2.5 years. And I remember starting out as a newbie and thinking Riverwild was so so far along. Time flies when you are feeling great!
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Grammie 2 3 (01-12-2011), Riverwild (01-12-2011), SallyC (01-12-2011), shayna (01-12-2011)
Unread 01-12-2011, 12:13 PM   #4
Riverwild
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I still can't believe I have had 47 infusions!

So much has happened since Tysabri first came to market. I think I have forgotten more than I remember about it all, and it's not from damage to my myelin anymore!

I was cleaning out files yesterday and I have this walloping huge Tysabri file with articles and studies and news reports and letters, etc. I just moved it to TWO thumb drives and my computer is blazing speed now!

It's sort of like I am now, as compared to pre-Tysabri. I'm still slow when I overdo, but it's NOTHING like I was before. My brain files are open and clear and running at a speed I never thought I would have again.

Thanks Ted Yednock!!
__________________
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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"Thanks for this!" says:
Grammie 2 3 (01-12-2011), Natalie8 (01-12-2011), SallyC (01-12-2011), shayna (01-12-2011)
Unread 01-12-2011, 03:00 PM   #5
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Happy 2011 everyone

I missed infusion #41 last Friday because of a headache I can't get rid of I think I'm getting a sinus infection but, I'm not ready to begin antibiotics yet. So I'm waiting to see what happens. I didn't want to have an infusion when I wasn't sure what was causing the darn headache. I have appointment next week with my neuro as well as my primary. If the headache isn't gone and I still feel congested I may begin antibiotics. I know the headache was originally caused by allergies but I wish it would either decide to become a sinus infection and I will begin antibiotics or just go away...LOL I think both my neuro and my primary will tell me to begin antibiotics if I still have the headache next week. BTW, headaches due to sinus congestion are common for me so this isn't a new symptom. I just don't know if it's an infection and I can usually tell.

Tomorrow will be 6 weeks since I had the JCV blood draw. I still haven't received the results I know my neuro wants me to stay on Ty regardless of the results of the blood draw because I'm doing so much better on it than I was before. Does anyone know of anyone who tested positive and chose to stay on Ty???????? My neuro did say I could take a few months off if I want to if I test positive. I just don't know what to do. At least I'm not experiencing any withdrawl symptoms from not getting my Ty fix last Friday but it hasn't even been a week. Ty has been wonderful for me!!!!!!!

I caught up on everything that has been happening by reading the posts of Ty part 2. Thanks for all of the info It really helps to know I'm not in this alone and that I can always count on someone here to help find the info I'm looking for.

BTW, Eddie, my wbc is slightly elevated since I began Ty. But, it's so close to being normal that the drs and I have decided not to worry about it.

hugs,
Shayna
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Unread 01-12-2011, 06:19 PM   #6
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I just got my test results....I'm negative I'm doing the "Happy Dance". I've scheduled infusion #41 for this coming Friday. By then I will have seen both my neuro and my primary and I'll know whether or not to begin antibiotics. I've had so many sinus and ear infections that taking antibiotics for them does not stop me from having an infusion. However, feeling crummy because of a darn headache does mean no infusion because I do get side effects from my infusions.

Thank you everyone for listening to me worry and complain about trying to get the darn test in the first place. 8 months is a long time to wait for a blood draw. and, that was a long way to go for one but it was worth it

hugs,
Shayna
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Unread 01-12-2011, 07:17 PM   #7
Grammie 2 3
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YAY!! That's great news shayna !! I am still waiting for results and it's been 7 weeks and yes, I've called a few times

Fri I will get my 52 infusion. I waited 6 weeks this time, seems to be o k...
I have fought hard to stay on Ty when 2 neuros wanted to "make" me stop. My life has been better, progression has halted. I am very thankful for this med

RW, thanks for starting part 3

Linda
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Unread 01-12-2011, 09:17 PM   #8
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Shayna, that's awesome!!! I am so happy for you!!
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Unread 01-13-2011, 10:16 AM   #9
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Congrats Shayna! Finally received my Stratify 2 paperwork last week. Hope to get tested soon (and get results relatively quickly) as I'm now over 4 years on Tysabri.
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Unread 01-13-2011, 02:23 PM   #10
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Quote:
Originally Posted by Grammie 2 3 View Post
YAY!! That's great news shayna !! I am still waiting for results and it's been 7 weeks and yes, I've called a few times

Fri I will get my 52 infusion. I waited 6 weeks this time, seems to be o k...

Linda
Grammie, I hope you receive your results soon and they are negative!!!!!! I hope we all test negative!!!!!!

I've tried waiting 6 weeks between infusions. I found it hard not to have them every 4 weeks Good luck tomorrow.

hugs,
Shayna
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