Caught my Dr at a seminar and he said between .2 and .4 indeterminate but, .24 is low, not to be concerned. I am not concerned but, just wonder what I was exposed to that activated the jcvirus and when and if it will continue to go up ??? Time will tell.

Linda

Hi Linda, what did your number go up from? What was it before? Below .2? If you are "indeterminate" then I guess that means you could be positive or could be negative?? They aren't sure?

I had a test done 2 weeks ago. My doctor said it had been updated from what existed 2 months ago. I'm not sure what the update is unless they are now giving it these numbers. I'm still waiting on my test results. Fingers crossed.

Wishing you both the best possible results.

when it is below .2 (neg)they do not give you the number.

Another neuro at the RMmsC thinks I need to go off Tysabri, I told him I didn't think so then he said the name of a med that I had heard of and then thought I would be interested in it back in 2012 but, it wasn't FDA approved for ms. He said they can make it work! I will talk to my neuro next month and make a decision. It is an RA drug.

Happy Holidays
Linda

Hello,
After 6 frustratingly painful years and 3 of them actively seeking a medical answer to my constant pain and slowly worsening disabilities I was diagnosed with MS on Dec 2. The neurologist started me on Ampyra and would like me to start Tysabri sometime next year after my JCV blood test, follow up MRI and LP. I have to be honest the though of PML scares the hell out of me. I have a 7 year old son and do not want to leave my husband to raise him alone. I am looking for experiences and possibly more accurate risk information about this therapy. This is my first post and I appreciate any advice, stories or info that you may be willing to share.
Thank you.

JCV antibody test came back negative. Yeah!

Just plugging along......

Hi Ker0pi

Welcome to Neurotalk. I'm sorry you have to be here. I understand your fear of PML. If you are JCV negative then your risks are quite minimal if any. I don't have the stats for you but I'm sure that someone here will. Wait until you find out your antibody status before you start worrying about Tysabri. There are many drugs available now, more than when I was diagnosed. When I started out, there were only shots. Now there are 3 pills and more drugs on the horizon. If you don't end up choosing Tysabri you have many options and you will find something. Good luck and keep us posted.

Hi KerOpi

I have been using Tysabri for more than four years now, and I am JC+. It is a gamble, and the stakes are high - I guess it is really important for you to know the risks and evaluate it from there.

I am sorry that you have had such a horrible time leading up to your diagnosis, and until now - I hope that now you have something definitive to work with you will be able to control this stupid disease and get on with life - at least to some degree (although I do believe it takes some time to get to know and accept the 'new' you).

As Natalie said, there are other options out there for you as far as meds go - I was on Betaseron for 8 years before Ty - and I had miserable side effects with Beta whereas I have none with Ty. I have friends who have used Gilenya (one who is quite happy with it, although she became quite ill at the start, it got better - and one who had to go off it because of side effects, and went back to Tysabri even though she is JC+).

This is such a personal decision, and no two people will react the same way to the drugs. All you can do is research, ask questions, and make your choices from there.

Good luck, welcome to NeuroTalk, and I hope all goes well for you.

Regards

had my first new infusion dec 4, went back in hospital dec 9. got steroids, not sure what is going to happen now. havent told my detroit neuro about the steroids. i'm much better but not able to stand or anything...

my mri said i had "innumerable" lesions on and in my brain...

I had #89 yesterday
Will get an MRI in a little over a week and then see my Dr in 3. I am looking forward to discussing staying on or leaving Ty !
Linda