how do you know if you have developed pml or not?

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

how do you know if you have developed pml or not?

Postby sofia » Wed Apr 21, 2010 4:15 am

when i started tysabri i got the impression that it would happen quite suddenly, and there would be quite profound differences in ones health.

i have tried to google, i have tried to find out how it manifests itself and how it develops. im now more under the impression that it develops more slowly, and isnt that easy to detect.

and that it isnt just steady downhill, that you can have ups and downs even with pml. have any of you recieved any info on this. ?

i got really ill after my last infusion, and it has taken me until now to recover, but i havent fully recovered, and i am quite weak, i have incresed symptoms, and i also have some new symptoms.

hospital just thinks it is allergic reaction to meds, and that the worsening of symptoms is a worsening of ms. they do not have any explanations, and they havent conducted any tests.

i realise i have just had 7 infusions, and it is highly unlikely that i have developed pml. but how do they know?
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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Re: how do you know if you have developed pml or not?

Postby RuSmolikova » Wed Apr 21, 2010 2:34 pm

sofia wrote:...and i also have some new symptoms... and it is highly unlikely that i have developed pml. but how do they know?


Experienced physician would ask for MRI (specific lesions). And for LP to detect JCV in CSF, in such case.
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Postby sofia » Thu Apr 22, 2010 1:41 am

tank you.
i phoned hospital again yeasterday to speak with my neuros, but they cant get back from the neurology conference in canada, and the nurses didnt know when they would be back, they had not heard anything.
i think i will ask for a new scan. somebody was the first to develop pml, the somone was the first to have it as ealy as 12 months after starting tysabri. nobody knows if it is possible to develop pml sooner. they can talk about likelyhoos, but in my opinion they can not be sure.
i probably think it was an allergic reaction though, but better be safe then sorry with these things i feel.
but they will probably not see it like that, to costly or something with to many scans. typical that is.
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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sofia
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