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Thread: Stiff Person Check In

  1. #91
    Distinguished Community Member Sunshine's Avatar
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    Yesterday’s IVIG was hard—
    4 hours into the8 hour infusion, my blood pressure spiked up from the usual 95-110 to 158. Nurse stopped infusion and called doc. Was told to give Ativan IV and wait an hour. If still high, no infusion . If normal, start the infusion again .

    So it came down to 110. All in all, it took 9.5 hours instead of 8... don’t know why that happened.

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  3. #92
    Distinguished Community Member Sunshine's Avatar
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    IVIG all day tomorrow. My buddy with SPS had an anaphylactic reaction to IVIG this week. I have been thinking about him. What a terrible disease.

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  5. #93
    Distinguished Community Member Sunshine's Avatar
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    I am moving in 7 days. I might lose WiFi and thus would be offline until it’s installed.

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  7. #94
    Distinguished Community Member Sunshine's Avatar
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    There are boxes all over the place, 80% filled. I had packed 25 a month or so ago. This past ten days I have packed 50 more. I realized the limiting factor was the taping of the boxes. You don’t realize but you use leg muscles to do this. So it was killing my legs with spasticity. Now I fill them and husband tapes them which has sped up the process.

    Friday is the day the movers pack up the house, and whatever I haven’t packed up. Saturday is the physical moving according to the plan.

    We might not have Internet right away....SO THERE MAY BE LESS POSTING HERE. STAY TUNED.

    It will be great not to have so many barriers to daily tasks. A couple of friends will help unpack the kitchen and put down shelving paper.

    This move has totally helped me realize how ill and disabled my body is. It’s like being in the twilight zone

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  9. #95
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    Bad spasm at 3 am this morning. ... likely due to moving and meds are , at 3 am,
    At the lowest blood level , as my last dose is double and at 9 pm. Doc said Can get up and double dose Baclofen and Tizanidine at midnight which brings other problems of more side effects and disrupted sleep.

    Was ready with rectal diazepam, tip all gelled up but the spasm subsided with 8 mg Tizanidine which takes 30 minutes to work. Feels awful The Whole day after. Laying low for sure for the rest of the week.

    SPS stinks.
    Last edited by Sunshine; 11-11-2018 at 11:02 AM.

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  11. #96
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    Last night I set a midnight alarm and took 10 mg Baclofen and 8 mg Tizanidine to get me through the night. No spasms. So far so good. Will avoid physical activity today.

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  13. #97
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    Comcast looks like a problem. Could be offline for up to several weeks depending,

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