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    PML?

    Hi everyone. I would like to know what the actual symptoms of PML are? Every time I look it up, it seems like the explanations are different.
    I have had 3 infusions and I am still sick from the last one but that seems like to quick to get PML. I have not really seen anything definitive on how soon one can get PML.
    PEACE
    Tortis

    #2
    Hi Tortis,

    First off, the have been no cases of PML if JCV-,and if JCV-, 3 months is quickto convert to JCV+, but it can happen. The risks for PML increase basedon a combination of your JCV titer number (the higher the number, the greaterthe risk) and number of dosages.

    As for symptoms, I was always told to look out for new/worsening neurologicalsymptoms. Straight from the Tysabri web site:


    "Healthcareprofessionals should monitor patients on TYSABRI for any new sign or symptom suggestiveof PML. Typical symptoms associated with PML are diverse, progress over days to
    weeks,and include progressive weakness on one side of the body or clumsiness oflimbs, disturbance of vision, and changes in thinking, memory, and orientationleading to confusion and
    personalitychanges.”
    If these areoccurring, call your neuro at least to advise of symptoms. If you are negative, they may want to checkagain and do an MRI.
    Hope you feelbetter.
    Kathy
    DX 01/06, currently on Tysabri

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      #3
      Hi pennstator. That is the same explanation as I have read and it really is not very definitive. I am JCV. positive and I do have a lot of those symptoms but my neurologist cancelled so now my Fri appointment is tomorrow morning but I had a very bad night last night. I do not want to be a hypochondriac but this is kinda scary as its now been since the 22nd. and still getting worse every day. She does not seem to feel that way but I can not actually talk to her only one her nurses so its second hand. Well I really appreciate your response I just know with PML the quicker the response the better the outcome. I guess it is what it is.

      "Healthcareprofessionals should monitor patients on TYSABRI for any new sign or symptom suggestiveof PML. Typical symptoms associated with PML are diverse, progress over days to
      weeks,and include progressive weakness on one side of the body or clumsiness of limbs, disturbance of vision, and changes in thinking, memory, and orientation leading to confusion and
      personality changes.”

      Peace
      Tortis

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