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    #1

    JCV testing

    How often are you tested for JCV? My physician seems to not want to test. She said she would keep me on it even if I was positive. I was uncomfortable with this, so asked to be tested at 9 months. Just wondered what others did.

    Thanks
    Lisa
    Moderation Team
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri
    Tags: None
    #2
    testing

    I was tested and was positive and then in 6 months retested just to verify. It was positive both times
    My neuro wants me to come off Tysabri because of it. I am quite surprised by your doc's decision.

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      #3
      Lisa, I've tested positive twice so I don't test anymore. I'm sure the touch program has a recommenation. My doc is getting my titer level if quest will release it. Take of your self Dale
      Dale in NC, dx'ed 2000, now SPMS

      Comment

        #4
        Touch Program

        You know I asked the nurse from the Touch Program and she said they had no recommendation, they left it up to the individual doctors. So I just wondered what other physician were doing. Thought it was weird that Touch had no real recommendations.

        Lisa
        Moderation Team
        Disabled RN with MS for 14 years
        SPMS EDSS 7.5 Wheelchair (but a racing one)
        Tysabri

        Comment

          #5
          Heaven help us if anyone offends the doctor... They probably need to leave the curse of treatment up to the individual docs. Personally, I'd have my GP call in the test. You can then make your own informed decision.

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            #6
            Lisa, I was first tested in december and was negative. I switched neuros in feb and the new neuro said that in late January they had done something to the test and it was more sensitive. He retested me and I tested positive! I think for you own piece of mind every six months for sure and with biogen covering the cost it makes me believe they are concerned about it as well.

            Comment

              #7
              I have the test every six months at Quest Diagnostics. I've had 3 negatives and go for my 4th next month. Fingers crossed, but even if I seroconvert, I'll still fight to stay on Ty.

              Comment

                #8
                once

                I tested positive once....it was one year in. My neuro thought, and I agreed, that I should stay on it regardless since my MS is really aggressive. With the tysabri protocol, he keeps a close eye on me, regardless of JC status.

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