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    #16
    JC Negative is great news.

    Wasing hands and staying away from sick people is a good idea on TY. The med makes you more susceptible to infection of anything.

    Good Luck on your first infusion.
    Katie
    "Yep, I have MS, and it does have Me!"
    "My MS is a Journey for One."
    Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

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      #17
      Thanks for all the well wishes. I don't know yet if Ty will be the med I end up on. I will see MS specialists on Monday. Hoping for the best, preparing for the worse.

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        #18
        My jcv has been between .23-.27 for probably almost 2 years, this is considered indeterminate as -.20 is neg and +.40 is positive. I was negative before that for approx 7 years. I do not know why I converted.
        Linda

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          #19
          Went for appointment and Dr was unavailable. Something came up and he could not be in. There were a lot of unhappy MSers. For some odd reason Im calm about this. Not really worried about this.

          His nurse said they'll call me about possible medications since all my tests are complete.

          So who knows. I don't even know what to make of this. I'm going to say it's providence.

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            #20
            JCV question: Negative numbers...?

            Originally posted by lindaincolorado View Post
            My jcv has been between .23-.27 for probably almost 2 years, this is considered indeterminate as -.20 is neg and +.40 is positive. I was negative before that for approx 7 years. I do not know why I converted.
            Hi all (and particularly LindainColorado):

            I am curious about the 'range' that one can have and be considered as negative for JC virus.

            I had my 3 month follow up today and had blood drawn to check for JCV. I asked if I could have a printout of the report when it is received in, and they said I could. (So, I'm interested if it will tell my actual number on it).

            At my initial testing, I was told that I was negative for JC virus.

            Today, I asked what my number was from my original JC virus test three months ago. (I saw the nurse practitioner today). She told me, "Negative is negative." (No number provided, or attempt to look up my number in my record).

            So, I am wondering why I am not being given my number. My guess is that maybe there is a slight fluctuation in it from reading to reading, and if it is in the normal/negative range, that is all the patient really needs to know? With that idea, I'm thinking that they think patients will freak out if they find out there is a .01 change or something like that, so they are more comfortable just saying "Negative" for any numbers in the accepted negative range?

            Any comments on this are greatly appreciated. Also, how long does it generally take to get in the results from this test? I think I should have the results within 2 weeks, but I don't know if it really should be much sooner than that. It will be interesting to see how the results are presented to me, and if any sort of number is given.

            Ok, thanks for reading/commenting!!!!
            RRMS Dx: 3/23/15
            (Optic Neuritis Dx 2/27/15; Feb/2014 right leg numbness--at the time diagnosed as Sciatica, but probably first episode)
            Started Tysabri 5/22/15: (Infusions: 5/22/15, 6/18/15, 7/16/15)

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              #21
              Hi Teekybird,
              I go to the RMmsC (I do not capitalize ms, I choose to not give it any respect ). I have been told by my neuro that they do not give #s to being negative. If under .2 that's all one needs to know, the #s do not matter.
              Linda

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                #22
                Teekybird,

                I spent two years working with Quest diagnostics to get my titer number. I finally succeeded this past April. Your number is available, and I found out that the results DO include the titer number; it all revolves around the coding number for the test, and for Quest it is 91665. 90257- No titer number. 91665- titer number. There is no price difference on the test. However, if your are negative, you need to "push" for that number. Mine is .12, and I pushed because I want to be able to watch to see if it elevates. I'm not sure why they just don't report everyone's number.

                I signed up with MyQuest online, and my results are now sent directly to my computer as soon as they are available. I had them in less than one week. I go to Quest because the test is paid for by Biogen.

                Hope this helps.

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                  #23
                  Originally posted by ru4cats View Post
                  Teekybird,

                  I spent two years working with Quest diagnostics to get my titer number. I finally succeeded this past April. Your number is available, and I found out that the results DO include the titer number; it all revolves around the coding number for the test, and for Quest it is 91665. 90257- No titer number. 91665- titer number. There is no price difference on the test. However, if your are negative, you need to "push" for that number. Mine is .12, and I pushed because I want to be able to watch to see if it elevates. I'm not sure why they just don't report everyone's number.

                  I signed up with MyQuest online, and my results are now sent directly to my computer as soon as they are available. I had them in less than one week. I go to Quest because the test is paid for by Biogen.

                  Hope this helps.
                  Great information Ru4cats:
                  So, it sounds like I will have more luck in getting my negative number through Quest than my actual doctor? I just went to the Quest website and found a form called, "Patient Request to Access or Disclose Laboratory Test Results," so I think that completing that may be a good place to start. I think I will also sign up for the Myquest online. Then it 'sounds' like after they receive and process the form (and my results) maybe it will be reported on the website.

                  One question about the coding though: At the time the specimen was collected (and on the paperwork) would it need to have been coded as 91665 in order for the test result to be processed as providing the titer number? (Since my blood was already taken and the paperwork already passed on, I'm wondering if I have to wait for the next 3 mo to make sure it is collected/coded as indicated?) I will look into this, and you have given me a great starting point. However, any additional clarification you can provide is appreciated.

                  How consistent has your number stayed to .12? I'm guessing that the professionals might not want us to have access to this number because there may be slight variance/error in testing results? I definitely would like to get my number to just be aware of what is going on. (I am just using hypothetical numbers here, but in my case, I would be discouraged if my number went from a .12 to say a .15, but I guess at least it is still negative if under .20? Also, I don't have any concrete information on this, but I think there may be some test variance/error that could also be the reason for a slight change in numbers?)

                  Thanks!
                  RRMS Dx: 3/23/15
                  (Optic Neuritis Dx 2/27/15; Feb/2014 right leg numbness--at the time diagnosed as Sciatica, but probably first episode)
                  Started Tysabri 5/22/15: (Infusions: 5/22/15, 6/18/15, 7/16/15)

                  Comment


                    #24
                    Originally posted by Teekybird View Post
                    Great information Ru4cats:
                    So, it sounds like I will have more luck in getting my negative number through Quest than my actual doctor? I just went to the Quest website and found a form called, "Patient Request to Access or Disclose Laboratory Test Results," so I think that completing that may be a good place to start. I think I will also sign up for the Myquest online. Then it 'sounds' like after they receive and process the form (and my results) maybe it will be reported on the website.

                    One question about the coding though: At the time the specimen was collected (and on the paperwork) would it need to have been coded as 91665 in order for the test result to be processed as providing the titer number? (Since my blood was already taken and the paperwork already passed on, I'm wondering if I have to wait for the next 3 mo to make sure it is collected/coded as indicated?) I will look into this, and you have given me a great starting point. However, any additional clarification you can provide is appreciated.

                    How consistent has your number stayed to .12? I'm guessing that the professionals might not want us to have access to this number because there may be slight variance/error in testing results? I definitely would like to get my number to just be aware of what is going on. (I am just using hypothetical numbers here, but in my case, I would be discouraged if my number went from a .12 to say a .15, but I guess at least it is still negative if under .20? Also, I don't have any concrete information on this, but I think there may be some test variance/error that could also be the reason for a slight change in numbers?)

                    Thanks!
                    Unfortunately, the test must have the correct code to get the titer--that was my problem. Your doctor MUST put the correct number on the script in order to get the results you want. At my last appt, she use a Quest script, and crossed out the incorrect number and wrote in 91665.

                    I ended up calling quest and they called the lab where I go to let them know they could use 91665. MyQuest is great!

                    Since this is the first titer number I've gotten in 11(?) tests, I won't know until October how consistent my number is. I only go every 6 months. I do know I've always been negative.

                    My neurologist thought it was great that I now have my titer number, and the people at Quest said they wanted everyone to have their number.

                    Negative is anything under .20.

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