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Thread: Stiff Person Check In

  1. #41
    Distinguished Community Member Sunshine's Avatar
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    Am going to Mayo next month for diagnostic work up.

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  3. #42
    Distinguished Community Member Sunshine's Avatar
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    My lightweight wheelchair arrived today. It’s a custom fit and works very well!

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  5. #43
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    Marijuana doctor said that almost everybody develops resistance to marijuana. The Cannibis receptors become depleted. So, No matter how much higher OR lower the patients dose themselves, the resistance does not improve.

    The way to deal with it is to stop it completely for 48 hours and then slowly titrate up for the next four days until you reach a therapeutic dose. Research shows the cannibis receptors regrow themselves during that period.

    A week ago I became suspicious that I was developing resistance because it was not working quite as well as it had. So, I stopped dosing late in the day on Saturday. On Sunday, I had only the same amount of mild discomfort all day that I had when I was on marijuana. So, I was puzzled.

    However, today I woke up with significant neuropathy, as intense as I had been having before I ever started marijuana late September.....Clearly it took 24 hours for it to wash out of my system.

    Tomorrow morning I will restart the marijuana at a very small dose, as recommended by the doctor. I will continue that until the sixth day when I can resume the therapeutic dose. It is even possible that I will not need as large of a dose. However, that is unlikely since I was at a very low-dose even when I stopped.

    It will be a rough ride but worth it.

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  7. #44
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    All day infusion today

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  9. #45
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    Getting records ready for Mayo. Got a ride lined up in case DH gets too sick to go.

    Looking forward to learning why the GAD65 test is all over the map ranging from 45 to most recent >450. Normal is <5.

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  11. #46
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    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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  13. #47
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    Today was all day IVIG. Will spend more time here tomorrow.

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  15. #48
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    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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  17. #49
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    All day infusion tomorrow, so will be offline

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  19. #50
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    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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