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    New Neuro OV

    I had my 1st visit with the neuro who took over my old neuro's practice. I liked him and he has a lot of MS patients - a big plus. It is status quo for me - staying on Tysabri every 4 weeks. No change in lesions on MRI, still JCV negative, bloodwork all good.

    After I left, I started thinking about some of the conversation and was struck again by how individual MS truly can be.

    He did his neuro exam before looking at my latest MRI. He said after the exam that I had an almost completely normal exam. After he looked at my MRI, he then said that it doesn't match up with me, that with the spinal lesion locations and load, he would have expected to me to have shown more on clinical exam and have significant disability. He then commented that I would be a good case study for his neuro class (he teaches) that neither the MRI nor the person tell the whole story - reinforcing that you need to treat both. Of course, now I am wondering if I am on borrowed time. I have had other docs comment on same thing, so I will get over it.

    He also asked me if I expected to be on this med at 95 It was just his exaggerated way of feeling out my thoughts on medication as I age. I told him I was aware of prior and current studies- Ms burns itself out, no it doesn't burn out, yes it does burn out and so on. He laughed. I told him it would depend on how I was doing with both MS (if progressing, what are the med options) and non-MS health issues (if I was paralyzed from a stroke, what would be the point), insurance, and other life factors. He then told me he had a SPMS patient that was off meds since 2004 and had a first and major relapse last week at 72. He said he has other patients off longer and no issues. Not sure if this was just his way of pointing out no guarantees. On a side note, he seemed genuinely distressed about his patient - I see that as a caring doctor.


    Those two conversations just hit me hard I guess - that it truly is individual. I wonder if I am living partly in denial due to my good fortune. I guess I will give myself the day to contemplate what ifs and then go back to counting my blessings and be grateful for today and not worry about what I can't control. Is that denial?
    Kathy
    DX 01/06, currently on Tysabri

    #2
    Originally posted by pennstater View Post
    ...go back to counting my blessings and be grateful for today...
    Pennstater,

    I don't think a person can be in partial denial, one can waver between two ways of looking at the same thing. Everyone here does that.

    So my advise is look at your own words, toss the "what ifs" & the "woulda / coulda's" altogether. You like the doc from what I gather. Isn't that enough to continue at this point?

    It took me a long time to realize that MS doctors (or specialist) are as individual as MS patients. And that comes from this web site alone. Don't overthink it. Not worth the anxiety.

    Jer

    Comment


      #3
      Thanks Jer. I didn't think partial denial was an option, but it helps to hear it. Yes, it is enough that I like the new neuro. And you are right - the what ifs don't help.
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        pennstater

        Originally posted by pennstater View Post
        I had my 1st visit with the neuro who took over my old neuro's practice. I liked him and he has a lot of MS patients - a big plus. It is status quo for me - staying on Tysabri every 4 weeks. No change in lesions on MRI, still JCV negative, bloodwork all good.
        Glad to learn that your appointment with new neuro went well!

        Originally posted by pennstater View Post
        He did his neuro exam before looking at my latest MRI. He said after the exam that I had an almost completely normal exam. After he looked at my MRI, he then said that it doesn't match up with me, that with the spinal lesion locations and load, he would have expected to me to have shown more on clinical exam and have significant disability.
        Truly amazing! Looks like Tysabri is very effective, as other members have similar success stories.

        Originally posted by pennstater View Post
        Of course, now I am wondering if I am on borrowed time.
        If you're staying on Tysabri, you most likely have a good chance of remaining stable (from what I've seen with other members on this DMT).

        Originally posted by pennstater View Post
        I guess I will give myself the day to contemplate what ifs and then go back to counting my blessings and be grateful for today and not worry about what I can't control.
        Sounds like a good plan and sound reasoning.

        Take Care
        PPMS for 24 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment


          #5
          Thanks KoKo. I wasn't thinking that while remaining on Tysabri, I have every reason to remain optimistic. Grateful you pointed that out!
          Kathy
          DX 01/06, currently on Tysabri

          Comment


            #6
            Neuroplasticity

            Originally posted by pennstater View Post
            ...neither the MRI nor the person tell the whole story - reinforcing that you need to treat both. Of course, now I am wondering if I am on borrowed time. I have had other docs comment on same thing, so I will get over it.

            ... I guess I will give myself the day to contemplate what ifs and then go back to counting my blessings and be grateful for today and not worry about what I can't control. Is that denial?
            Reading your update I immediately thought about neuroplasticity, a term many who read these boards are probably also hopeful about and/or know about. I heard two neuros and an opthalmologist who does vision rehabilitation say they do believe in it...

            Neuroplasticity. Neuroplasticity is the nervous system's ability to adapt its structure and reorganize itself to form new neural pathways. ... Retraining the neuronal circuitry through rehabilitation and electrical stimulation may promote neuroplasticity that can restore functional abilities to spinal cord injured people.

            I have personal thoughts about it, but even neuroplasticity is perhaps the luck of the draw. For example does it happen more readily with a patient who has their symptoms occur in a certain order and can maintain a level of activity, etc.

            Whatever the case congrats on your good news, and keep on truckin'!
            All the best, ~G

            Comment


              #7
              Originally posted by gargantua View Post
              Reading your update I immediately thought about neuroplasticity, a term many who read these boards are probably also hopeful about and/or know about. I heard two neuros and an opthalmologist who does vision rehabilitation say they do believe in it...

              Neuroplasticity. Neuroplasticity is the nervous system's ability to adapt its structure and reorganize itself to form new neural pathways. ... Retraining the neuronal circuitry through rehabilitation and electrical stimulation may promote neuroplasticity that can restore functional abilities to spinal cord injured people.

              I have personal thoughts about it, but even neuroplasticity is perhaps the luck of the draw. For example does it happen more readily with a patient who has their symptoms occur in a certain order and can maintain a level of activity, etc.

              Whatever the case congrats on your good news, and keep on truckin'!

              Thanks G. I have read alot about neuroplasticity and it fascinates me. I read a book that highlighted some medical cases, truly amazing. Stroke victim who lost use of one whole side, extensive rehab, recovered, and functional MRI shows just the one side of the brain controlling both sides of the body!!!

              That book seemed to infer the earlier started, the better. But with MS, can be a catch-22 since you don't know necessarily know when the nerve is damaged.

              My last neuro's theory was that in my younger days, I did alot that built up my cognitive reserve, which is helping me now. That the signals may have been able to reroute due to the reserve. Not sure if anything to that theory. Won't know unless a functional MRI done. Even then, who knows? He was always on me to keep learning and exercising still!

              Thanks for the well wishes.
              Kathy
              DX 01/06, currently on Tysabri

              Comment


                #8
                Originally posted by pennstater View Post
                I wonder if I am living partly in denial due to my good fortune. I guess I will give myself the day to contemplate what ifs and then go back to counting my blessings and be grateful for today and not worry about what I can't control. Is that denial?
                Hmmm, I'm trying to think through the partial denial thing. Her doesn't think it exists. I'm wondering why not; many things are on a continuum. Just thinking out loud here.

                And; yeah -- counting blessings, gratitude for today, and not worrying about what you can't control are good strategies. They help reduce stress and cultivate resilience.
                ~ 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
                  Originally posted by Mamabug View Post

                  And; yeah -- counting blessings, gratitude for today, and not worrying about what you can't control are good strategies. They help reduce stress and cultivate resilience.
                  Thanks for the reminder Faith. Sometimes we need that reinforcement.
                  Kathy
                  DX 01/06, currently on Tysabri

                  Comment

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