hayleyc85 06/06/17
Last reply 8 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

Hayley

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stumbler
8 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.


hayleyc85
8 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?

:/


stumbler
8 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. 😉


hayleyc85
8 months ago

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


stumbler
8 months ago

That goes without saying, @hayleyc85. 😉

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