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-   -   Tysabri Check In, Support and Information Part Three (https://www.neurotalk.org/multiple-sclerosis/142931-tysabri-check-support-information.html)

Grammie 2 3 11-21-2016 08:34 PM

He's moving to CO:D It's for a few months, testing the waters (snow :)). YAY
Happy Thanksgiving Everyone !
Linda

Grammie 2 3 12-12-2016 05:57 PM

Last Thurs I had #112! Still infused every 56 days.
Thank G-d and Tysabri I am stable :D
Linda

Grammie 2 3 02-03-2017 12:21 PM

Jan 31st was #113..YAY Tysabri for me :D

My significant other has been here for 3 /12 weeks. He, me and Thomas kitty cat are adjusting;) My health has had an issue or two as I have experienced stress! Oh well.. hopefully it will be worth it and it appears the stress has passed !

Linda

Grammie 2 3 02-06-2017 05:49 PM

JCV test
 
Me again;)
My Dr orders a JVC test every 2 months for me. For a couple years I have been in the indeterminate range of .22 to .26. I rec'd my latest #'s Fri, .19 which is negative?? I emailed my Dr's office asking what this meant. A short time ago I received the reply saying that overtime the body can rid itself of the virus since, my #s were so low that's just what my body did :D This also explains why I've heard of someone's #s going down !

Since I go to the RMmsC I'm inclined to be a believer !

I am excited for this news and wanted to share!

Linda

Riverwild 02-19-2017 04:41 PM

Jumps through the door and peers around...:D
Howdeeee!
Stopping in to report that I'm alive!
It will be 10 years on May 25, 2017 since I started Tysabri.
I am still JC negative. I've had no relapses, no signs/symptoms and no problems since I started way back when.
I've missed two infusions since I started, one for appendicitis and one because of insurance.
I'm off all meds except the Tysabri and MMJ
I am now a full time college student, my full time job ended because my employer went bankrupt. I am back on the river in season and in college all the time, trying to complete my degree in a year (yes, I'm crazy)
I'm hoping to come out of all of this with skills that will allow me to take to the road and travel, while still doing some sort of work to add to the money pot.
The very best thing about being in college (besides the learning, that is) is ...wait for it...
STUDENT HEALTH INSURANCE! LOL!
Gold plan, PPO, full coverage, low deductible and copay and much lower premium costs than the plan I had through the government.
I may have to be a student forever...
Hope everyone's doing well! :grouphug:

Riverwild 02-19-2017 04:47 PM

Quote:

Originally Posted by Grammie 2 3 (Post 1235762)
Me again;)
My Dr orders a JVC test every 2 months for me. For a couple years I have been in the indeterminate range of .22 to .26. I rec'd my latest #'s Fri, .19 which is negative?? I emailed my Dr's office asking what this meant. A short time ago I received the reply saying that overtime the body can rid itself of the virus since, my #s were so low that's just what my body did :D This also explains why I've heard of someone's #s going down !

Since I go to the RMmsC I'm inclined to be a believer !

I am excited for this news and wanted to share!

Linda

Glad to hear that you are negative!!
I never showed any antibodies, every test comes back 0.0. I still don't know how I didn't have any exposure to the virus, having lived all over the world as a kid.

Grammie 2 3 04-19-2017 11:26 AM

JCV; went back to positive/indeterminate .25. I'm grateful it's low.

Pretty sure I had #114

Been with my significant other for over 3 months :) It helps that he was my first BF in 1963 till 1966. We have history/memories and the present! Life is good:)

Natalie8 04-29-2017 07:32 PM

Glad to hear Linda that you are back into the indeterminate range! Congrats on the lengthy Tysabri journey. Sounds like life is great.

Yeah for college Riverwild!

I just had an infusion a few weeks ago. I've lost count now. But I started in July 2008 - so I'm going on almost 9 years. Knock on wood - here is for many many more!

Natalie8 09-08-2017 12:04 AM

I haven't been checking in regularly - I can't believe I joined this forum 10 years ago! I wanted to update the forum in case people still visit. I always loved everyone in here.

I was at the nine year mark to the month for Tysabri when I was diagnosed with cancer. I had surgery and started chemotherapy. But my neurologist said that I needed to go off of the Tysabri. My sense is that I will not be able to go back on the drug because of all the chemotherapy medications which obviously suppress your immune system. I am still JC virus negative. I have no idea what I will go back on when the chemotherapy is over. It was emotionally crushing because Tysabri has been my lifeline for so long with zero relapses.

Anyhow I guess it's good news there are more new drugs out there these days. Anyhow it was a good 9 year run on Tysabri. I'm going to miss that drug.

Grammie 2 3 09-11-2017 10:32 AM

Natalie,
:hug: I wish you my very best..
Linda


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