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    #46
    Error: My most recent GAD65 was >250, not 450 in above post.

    I sure hope the dx is straight up Stiff Person Syndrome,— and not the ones caused by cancer such as Thymoma and PERM, and Lambert-Eaton Myesthenic Syndrome (LEMS).

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      #47
      Today was all day IVIG. Will spend more time here tomorrow.

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        #48
        Finished another bout of IVIG yesterday. #37

        Back from Mayo. More testing in June. So far, it’s been a mediocre experience. I did get a lot from the OT eval though.

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          #49
          All day infusion tomorrow, so will be offline

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            #50
            A car repair appointment, a doc appt and a sudden second doc appointment. Will the legs be able to drive home at end of afternoon?

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              #51
              Yesterday I hit rock bottom with frustration and grief.

              Life seems to be passing me by as I try to exist and adapt to my new reality where I am capable of doing so little.

              Today is better, I am focusing on what I am able to do and I’m feeling good about being kind to people. I have always been a pretty kind person, but I forgot how valuable that can be to the world.

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                #52
                Sunshine, I am sorry to hear that you were down, but not surprised.

                At a funeral mass in an unfamiliar church last week, the priest said that our job is to be kind and helpful. Not to accumulate stuff or money or feel safe or have the most imaginary friends (Facebook?). To know and help our neighbors and family.

                It sounds like you are doing that.

                ANN
                There comes a time when silence is betrayal.- MLK

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                  #53
                  Was telling DH yesterday that the last several weeks have seen modest improvements in SPS/MS. I can walk forward on the modest handicap inclines now, instead of side step. I can walk about 10-15% further before feeling pain and spasticity. I am thinking clearer.

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                    #54
                    IVIG all day today. I could see the improvement at the infusion center as well. Was easy to walk to the room, to use the restroom, compared to a couple of months ago.

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                      #55
                      Continue to maintain the 8mprovements.

                      Dare I hope for even more?

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                        #56
                        Dare to hope. Always!

                        ANN
                        There comes a time when silence is betrayal.- MLK

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                          #57
                          Two days ago, the symptoms came back. It was the day before IVIG. All afternoon my legs were stiffening and felt like my feet would turn inward, and shins give out. So demoralizing.

                          Today I woke up, the day after IVIG with, so far, less stiffening. Hoping it lasts!

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                            #58
                            Bad foot spasm today, two hours before surfing.

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                              #59
                              The past couple of days I have been able to stand longer without spasticity setting in. Yes, there was that spasm set back, but I do think I have been improved the past couple of months.

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                                #60
                                IVIG all day today.

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