hayleyc85 06/06/17
Last reply 11 months ago
Quick Question (& long time no speak!)

Hi Guys and Gals,

its been a loooong while since i logged on, im ok but i felt myself sinking into a pitty party and constantly checking this, more than healthily really.

I have had an mri booked in which i queiried and its apparently routine to check my PML risk? I have blood tests for this every 3 months, so does this mean that i’ve got the JC virus and not been told?

Do you all on Tysabri get given a mri as a precaution?

Thanks in advance


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11 months ago

Hi @hayleyc85 and welcome back.

Blood tests are used to check your JCV status and the titre level, if you’re positive. I’d be surprised if you weren’t advised of a change to your JCV status.

When was your last MRI? Annually is not unusual, to monitor your MS and ascertain whether you present DMT is working for you.

11 months ago

Hi @stumbler

This is what i thought, i queiried it because it was a routine/annual check up on the condition to check to see if the meds are working, it should be a head/neck/spine mri and to be with and without contrast, so i asked the MS nurse and this is what she said. ”A routine screening MRI for the PML’ But i dont think that is routine? I dont want to pester her, should i ask if somethings changed? As far as im aware my bloods go off to the nerherlands or whereever every couple of months to check that and last time i got a letter saying it was fine?


11 months ago

@hayleyc85 , it’s good that you are receiving annual MRIs to check the effectiveness of the Tysabri and ensure that any PML risk is identified early and addressed.

Obviously your JCV status has a lot to do with this risk, so you are justified in wanting to know whether you are now JCV+ and whether your titre levels are acceptable.

That’s peace of mind, not pestering. 😉

11 months ago

Thats true! I will ask! In other news, i’ve got my PIP tribunal on Tues. Wish me luck @stumbler

11 months ago

That goes without saying, @hayleyc85. 😉

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