JCV negative

[shel67]

I guess that's good news. I will try to have tysabri be my DMD... I hope to God this is the right choice.

[DPL2014]

Congrats!

That's Great news! I am jcv negative too. I got tested just in case I switch to Tecfidera. A person can become positive at any point though, right? Dumb question, but is it something you "catch"? Like can I wash my hands more often to avoid jcv or does taking certain medications make a person more susceptible...?

Good luck with Tysabri!

[shel67]

I don't know the answer to that. I have the same questions.

[lindaincolorado]

shel67, I call that excellent news
I hope all works out for you to get Tysabri. Other than maybe Lemtrada it is the biggest gun to fight ms. I would hope you are excited to start Ty.

[Seasha]

Hi shel~ I've been following your posts and happy to hear the good news!

Good luck to you and keep us updated on how it goes

[Boymom123]

Congratulations!!!

Great news!!! I know you have been anxiously awaiting this result and I hope you are able to Ty on board

[ru4cats]

My neurologist told me there is a 2% seroconversion rate each year for the JC virus. I have been on Tysabri for 5 years, have had 10 blood tests, and remain negative with a .12 index. Positive begins at .20. I have the test done every 6 months at Quest Diagnostics since Biogen pays for the test, and it costs in excess of $1200 last time I checked. I recommend everyone be aware of their index since you can monitor your own levels.

It is my understanding that most people acquire the JC virus as children or young adolescents playing with dirt (i.e. "waste" from animals), urban sewage, and contaminated water. Since I no longer am exposed to these things, I figure I'm pretty safe. I do keep this information in the back of my mind and act accordingly.

Congratulations on testing negative. Good luck on your Ty adventure. I recently had my 9th MRI, and the best news from the results was I have a "normal" brain volume! Woo hoo! That's why I'm on Ty!

[Teekybird]

I recently had my 9th MRI, and the best news from the results was I have a "normal" brain volume! Woo hoo! That's why I'm on Ty!

Ru4cats: Great news about your 9th MRI. Just wondering, when you said the last result is that you have "normal" brain volume....has your brain volume actually increased from past MRIs?

Shell67: I'm happy to hear your news. When's the 1st going to happen?

Boymom123: Also, just wondering how things are going for you...? Are you still waiting to find out JC results?

[ru4cats]

No, I don't believe it has increased, but since loss of brain volume is one of the items you are trying to prevent in MS, I was thrilled to see it was "normal" for my age. My neurologist said it was at the last MRI, but I was glad to see it written down.

If you haven't watched it, I recommend the youtube webinar by Dr. Vollmer entitled, "Maximizing brain health." In essence, brain atrophy is the best predictor of future disability. Late life quality of life is better with the highest brain volume. Since I'm 63, I'm all for a better quality of life.

Hope this helps.

[Teekybird]

Shell 67 & DPL2014: I don't think that hand washing could hurt in preventing getting the JC virus. I think it is not totally known how you get it, but bad sanitation is what I've heard most often. (Which if that is the case, it sort of surprises me that 'so many' people in the U.S. have it already).

I never actually saw the paperwork from my first (and only as of now) JCV bloodwork; the doctor just said I was negative. I guess that is worth finding out. I figured if negative the titer number would be 0.00.

Ru4cats: I have seen that video. It actually has me a little obsessed about "my brain" which is why I asked if your volume had actually increased. I know the norm is for it to atrophy and decrease in size. I have started regularly doing "brain exercises." Some free (and yet addicting) ones at: http://www.aarp.org/health/brain-health/brain_games/

Unfortunately lately I have been better about exercising my brain than my body. I have to get better at that.

[Boymom123]

Teekybird

Teejy I don't see my doctor again until August. She will test me for JCV then. Thanks for asking!

[shel67]

shel67, I call that excellent news
I hope all works out for you to get Tysabri. Other than maybe Lemtrada it is the biggest gun to fight ms. I would hope you are excited to start Ty.

I need to talk to doctor on the 3rd. I hope I can get this med with no trouble. It's the infusion cost I'm concerned about.

[shel67]

My neurologist told me there is a 2% seroconversion rate each year for the JC virus. I have been on Tysabri for 5 years, have had 10 blood tests, and remain negative with a .12 index. Positive begins at .20. I have the test done every 6 months at Quest Diagnostics since Biogen pays for the test, and it costs in excess of $1200 last time I checked. I recommend everyone be aware of their index since you can monitor your own levels.

It is my understanding that most people acquire the JC virus as children or young adolescents playing with dirt (i.e. "waste" from animals), urban sewage, and contaminated water. Since I no longer am exposed to these things, I figure I'm pretty safe. I do keep this information in the back of my mind and act accordingly.

Congratulations on testing negative. Good luck on your Ty adventure. I recently had my 9th MRI, and the best news from the results was I have a "normal" brain volume! Woo hoo! That's why I'm on Ty!

That is great news. So it's not from the lowered immune system we can contract it later on?

[shel67]

Ru4cats: Great news about your 9th MRI. Just wondering, when you said the last result is that you have "normal" brain volume....has your brain volume actually increased from past MRIs?

Shell67: I'm happy to hear your news. When's the 1st going to happen?

Boymom123: Also, just wondering how things are going for you...? Are you still waiting to find out JC results?

I don't know... Have to talk to doctor. I'll see him on 3rd. I did testing and blood work for all the meds. I hope I can get TY. That's what I'm going to fight for.

[ru4cats]

shel67,

I just saw my neurologist today and asked for clarification on the JC Virus. She said they have yet to definitively "prove" where the JC Virus comes from or how it is acquired. Through interviews after being diagnosed as JC positive, they have zeroed in on sanitation in someway being the likely culprit. However, she did say it is acquired in childhood/early adolescence, so the use of Tysabri plays no role in your acquiring the virus.

Although I am negative, according to my index, I do have a "load" of .12 in my system. This means I do have the virus, but it doesn't affect my ability to take Tysabri. A positive begins at .20. Dr. Reid said it is also unknown why 2% seroconvert each year. Some convert after a few infusions, some after many months or years, and some never. I strongly recommend that you make sure you get tested twice a year and insist on being provided your index. It took me two years of badgering to finally get it, but then I'm in the outback of Montana, and we're a little slow here.

You will also have blood work done every three months (or you should have) to monitor your liver enzymes and something on the cbc panel that I don't remember. Sorry.

I hope this information helps in some small way. Infusion 66 was today! Onto year 6!