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    #1

    Home from 6-month check up

    It's a 3-hour drive, one-way, in Kansas City, at KU Med Center. Nothing new, and no news is good news, right?

    Also completed the second follow-up on a KU research study, too. One more to go. They use sensors and cameras, during two to three hours of "walking" and "standing" tests, to test for mobility and balance, swaying, etc. There is one more follow-up to go.

    The researcher hopes to, then, develop a product to market to neurologists to have an additional way (other than MRI's and clinical observations) to measure and track MS progression. I think that, after the last follow-up, which will be in six months, that they will give me some data on my progression during the two years of the study.

    KU reimburses me for my time and mileage. Since I'm going anyways, for my appointment, the mileage reimbursement is just "gravy".
    ~ Faith
    MSWorld Volunteer -- Moderator since JUN2012
    (now a Mimibug)

    Symptoms began in JAN02
    - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
    - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08    .
    - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
    - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.
    Tags: None
    #2
    Glad to hear "no news". Love those type of appointments. Thank you for participating in research too...any additional tools to help our docs are a bonus.
    Kathy
    DX 01/06, currently on Tysabri

    Comment

      #3
      hooray for you! And, they paid for your trip! It does not yet much better than that.
      I do have to wonder how successful this program would be. You would have to be able to stand and to move around to complete this test.
      hunterd/HuntOP/Dave
      volunteer
      MS World
      hunterd@msworld.org
      PPMS DX 2001

      "ADAPT AND OVERCOME" - MY COUSIN

      Comment

        #4
        No, that's just the time frame of the study, so they can collect documentation in order to develop a product.

        I expect the product will simply include a few of the standing and walking tests, during a solitary visit, and results might be available immediately.
        ~ Faith
        MSWorld Volunteer -- Moderator since JUN2012
        (now a Mimibug)

        Symptoms began in JAN02
        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08        .
        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

        Comment

          #5
          Awesome news Mamabug! A "nothing new" appointment is the best! Here's hoping we all can have some of those!
          RRMS: Diagnosed July 2013
          Assistive Device: cane.
          Meds: Copaxone, Ampyra, Vitamin D

          Comment

            #6
            Glad to hear!

            Glad to hear that you are doing well. I will also be going to KU Med Center in March. I am being seen by Vernita Hairston, M.D. Hopefully with an answer as to what is going on in my body... MS or not! I have been keeping track of my falls and any "weird" symptoms in a notebook. If I don't I tend to forget.

            Comment

              #7
              Glad to hear!

              Glad to hear that you are doing well. I will also be going to KU Med Center in March. I am being seen by Vernita Hairston, M.D. Hopefully with an answer as to what is going on in my body... MS or not! I have been keeping track of my falls and any "weird" symptoms in a notebook. If I don't I tend to forget.

              Comment

                #8
                Ladycaralaw

                Sounds like you're still in limbo. Hope you get a dx. I see Dr Sharon Lynch.
                ~ Faith
                MSWorld Volunteer -- Moderator since JUN2012
                (now a Mimibug)

                Symptoms began in JAN02
                - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08                .
                - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                Comment

                  #9
                  OMG Faith, I read the title of your post as if you just came back 6 months later from being checked up, like you were in a skilled nursing facility or rehab all this time.
                  Reading your title wrong (duh MS brain) made me rush to write a response. Until...sigh.. I
                  finally collected my wits and it made sense.

                  Glad you are reimbursed and things are stable. (stable, that always cracks me up! LOL)

                  Be well my friend,
                  Jan
                  I believe in miracles~!
                  2004 Benign MS 2008 NOT MS
                  Finally DX: RR MS 02.24.10

                  Comment

                    #10
                    Originally posted by mjan View Post
                    OMG Faith, I read the title of your post as if you just came back 6 months later from being checked up, like you were in a skilled nursing facility or rehab all this time.
                    Reading your title wrong (duh MS brain) made me rush to write a response. Until...sigh.. I
                    finally collected my wits and it made sense.

                    Glad you are reimbursed and things are stable. (stable, that always cracks me up! LOL)

                    Be well my friend,
                    Jan
                    Oh my. Now I'm laughing. I had a "check-up"; I wasn't checked in. :-)
                    ~ Faith
                    ~ Faith
                    MSWorld Volunteer -- Moderator since JUN2012
                    (now a Mimibug)

                    Symptoms began in JAN02
                    - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                    - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08                    .
                    - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                    - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                    Comment

                      #11
                      Originally posted by mjan View Post
                      OMG Faith, I read the title of your post as if you just came back 6 months later from being checked up, like you were in a skilled nursing facility or rehab all this time.
                      Reading your title wrong (duh MS brain) made me rush to write a response. Until...sigh.. I
                      finally collected my wits and it made sense.

                      Glad you are reimbursed and things are stable. (stable, that always cracks me up! LOL)

                      Be well my friend,
                      Jan


                      That was my first thought, too. You have a life of fullfullment. And a life of contribution that, I hope is one that you can enjoy the fruit from.

                      Comment

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