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Old 11-21-2016, 08:34 PM #531
Grammie 2 3 Grammie 2 3 is offline
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He's moving to CO It's for a few months, testing the waters (snow ). YAY
Happy Thanksgiving Everyone !
Linda
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Old 12-12-2016, 05:57 PM #532
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Last Thurs I had #112! Still infused every 56 days.
Thank G-d and Tysabri I am stable
Linda
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Old 02-03-2017, 12:21 PM #533
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Jan 31st was #113..YAY Tysabri for me

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
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Old 02-06-2017, 05:49 PM #534
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Default 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 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
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Old 02-19-2017, 04:41 PM #535
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Jumps through the door and peers around...
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!
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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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Old 02-19-2017, 04:47 PM #536
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Quote:
Originally Posted by Grammie 2 3 View Post
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 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.
__________________
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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Old 04-19-2017, 11:26 AM #537
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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

Last edited by Grammie 2 3; 04-19-2017 at 11:28 AM. Reason: mistake
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Old 04-29-2017, 07:32 PM #538
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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!
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Old 09-08-2017, 12:04 AM #539
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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.
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Old 09-11-2017, 10:32 AM #540
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Natalie,
I wish you my very best..
Linda
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