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A MyMSTeam Member asked a question 💭
Placerville, CA

Hi sorry for all the questions, I'm. I'm almost a week into this diagnosis and am trying to figure out all the stuff that goes along with ms. Wanting to know if anyone else has the jc virus and if so did you go on or avoid meds and if you did meds which one. Thanks again

August 19, 2021
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A MyMSTeam Member

@A MyMSTeam Member has it right. So ahead of the whole MS game at this point. It surprised me how many MS patients have the JC virus (don't quote me but I heard half). Your neuro should be real in tune with DMTs where JC virus is a problem. I do know Tysbria is one med where your JC virus status can be an issue. I would just ask your doctor about which DMTs can cause issues with those who test positive for the JC virus. Never, ever worry about asking to many questions. How else can you learn?

August 20, 2021
A MyMSTeam Member

Hi,wow a week into a diagnosis,wow horrible time coming to grips with stuff. First thing to remember is You will be OK,glad to hear you are already getting onto the DMT side of things,this matters,the hardest thing to deal with is that if your DMT is working nothing changes,so don't expect wild improvement ,it's about stopping things from getting worse. There are lots of DMTs even for those JCV positive,usually it just means they have to monitor your blood work a bit more often .
You will be Ok.

August 19, 2021
A MyMSTeam Member

I'm not, but a book that helped me when i was first dx is MS for Dummies.

August 19, 2021
A MyMSTeam Member

I’m jcv positive. Was on Tsyrbri for 4+and half years but had to come off because there’s no data on the PML risk after the 4 year mark. Had to be off of it at least 6 months before starting any other DMT. Somehow the ball got dropped at the neurologist office and 18 months later I finally got started on Ocrevus infusions twice a year. Haven’t really noticed a lot of difference but haven’t felt like lm any worse either from the MS. I have back and hip issues now after I tried to stop a fall and instead whipped myself around and fell backwards into our steps hitting my back on the steps and bouncing down about 4 steps. Already having the MS doesn’t help.
Sorry more info than needed

August 19, 2021
A MyMSTeam Member

Welcome Ricky! Glad you found the site and decided to join us.

First, I'm not an MD; just another clown with MS.

But from what I know roughly 1/2 of people have the JC virus in us. Only some DMT drugs have a risk of getting the nasty PML disease that one can get from the combination of those DMTs and the JCV. Even then, a good doctor can monitor your JCV levels and be ready to get you off that DMT if needed.

Serious stuff, right?!But unfortunately, MS is a serious disease. :-(

This doctor's "thought experiment" might help you put things into perspective:

https://www.youtube.com/watch?v=nMVmJh12SZA

August 19, 2021

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