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    #91
    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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      #92
      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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        #93
        I am moving in 7 days. I might lose WiFi and thus would be offline until it’s installed.

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          #94
          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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            #95
            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, 10:02 AM.

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              #96
              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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                #97
                Comcast looks like a problem. Could be offline for up to several weeks depending,

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                  #98
                  It looks like you are off line. Miss you.

                  I hope the move did not set the MS or SPS back.

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

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                    #99
                    Getting Internet connectivity back after a move can be a challenge, to put it mildly. I hope everything went smoothly,
                    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

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                      We are back on line. But cell service is poor Will have to get a signal booster. WE have a landline , but it doesn’t ring, so outgoing calls only.

                      The breakers are the newest commanded by the government. THey trip easitly. So we lost power in the bedroom, which was tough on the midnight dosing. Found ways around that. But it was scary at first. Electrician is working on the problem.

                      INcreased Baclofen to 100 mg daily since i had maxed out on the Tizanidine dose. So far okay.


                      TOmorrow is infusion all day long
                      Last edited by Sunshine; 11-27-2018, 01:29 PM.

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                        Spasmed badly at IVIG, and then three times more the night after IVIG. Had to use rectal Valium at home to stop the spasm which thankfully worked in 10 minutes.

                        Upped Baclofen dose, and have had two nights of no spasms. Feel ready to drive to store again. Stocks are depleted. Friends were driving me to docs yesterday and to produce stand.

                        See neuro in 2-3 weeks. Thinking he might add Valium to the mix.

                        Visual disturbances are relentless. Hands have intention tremors making it hard to type on line, and need extra care carrying things. All kinds of compensatory strategies to prevent dropping things.

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                            Helpful visit with neuro. Will try to decrease Baclofen by 10mg at my early morning dose, to decrease Side effects which have really hurt QOL. Hopefully will tolerate this decrease without bad stiffening and spasms.

                            ALso have now Ativan pills for IVIG and for break through spasm, instead of having to do rectal Valium, which is very inconvenient and hard to do to oneself.

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                              Yesterday was on the reduced Baclofen dose of 100mg daily. Less side effects, still some there . Will keep on 100 mg for one week. If still no spasms, can try reducing to 90mg daily.

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                                Another spasm free night. Was able to walk and stand more yesterday, compromised skin on seating bone is healing. Started using ROHO cushion yesterday too, and I think the less sitting is the key.

                                Working hard to beat back the side effects of inactivity and high dose muscle relaxants.

                                What a beastly disease...

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