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    Hello Jamesandy and welcome to the board!

    The GI consult went well. I was pleased at how much my ability to negotiate this building has improved. While there, I was also able to drop a Lab sample off, making it a double accomplishment.

    Tonight I will drop my Baclofen at the midnight dose by 5 mg for the next two weeks, unless it triggers spasm. I am trying to reduce it in hopes of being less dizzy and shaky. All day. Doc said to reduce it every two weeks and see how it works out. Nervous, but I gotta try it.

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      ((((((Sunshine)))))) ~

      You are in my prayers that the Baclofen dose reduction will be successful. Any possibility of increasing your MMJ doses as you taper down on Baclofen?

      I know it was a big day for you, and I'm very pleased for you that it went well.

      Healing energy on its way ~

      Love & Light,



      Rose
      Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

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        8 Days ago, I cutback to 85mg daily of Baclofen, most at my 9pm and 12/30 a.m dose times.
        3 of those nights i had middle of the night spasms, None sated over 10” and were self Limited. The pay off was less divines, more energetic productivity, happier mood, more walking.

        Last night was hellish. Woke at 2 am with an ankle spasm, settled down, no harm no foul. Again before 3 am awoke with spasm again. Their third spasm grabbed the side of my calf really bad, yowling, both legs felt dicey and unwalkable. So, I took an Ativan. 60 minutes later I woke up with horrific spasms in both legs. I had rubbethe MMJ lotion on the ankles after the second episode. No apparent help.

        So, right o th e. Heals of the Ativan, I took a Rectal Valium >It stopped it in 10 minutes.

        Messaged Dr about what to do, since less Baclofen benefits me re side effects. He said to add 2-4mg Tizanidine at 9PM dose or an Ativan.

        Wil try tizanidine.
        IVIG is Wednesday.
        I chose not to swim today: It would be reckless.

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          IVIG al day today. Need it.

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            Today’s infusion went very well. I just ran across the room. I have no pain, nada. Still have the 1:30 Ativan in my body, i bet.

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              Swam 800 yards 25 minutes.
              Folded down seats in car and put down surf board bag. Put board on Low shelf so I can wax it sitting tomorrow.

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                2 days ago I had a Cystoscopy with Hydroextension with Propofol for anesthesia. I had lots of peeing trouble which I thought was due to MS and SPS faulty nerve signals and bladder spasming.

                The doc saw a healthy and large bladder with scar tissue in th urethra blocking the flow on May 8.


                I am home now resting on Ativan for several more hours. The Cetified Med Assistant removed the plug and inserted watetlr in the bladder and measured how much came out. 300cc in, 300cc came out. Success. I will completely stop worrying when I can pee at home too, which is where I am. Doc hopes this fixed the problem: i.e. fixed the urethra stricture which heh has only seen 2x in 30 years. I always go fo the rare :)

                Think I will do no work until tomorrow.and Will swim tomorrow.The cover is off for the summer: will be easier to swim, and when DH isnt home, I can even dangle my legs in pool steps to read or just listen to birds.

                My herbs and tomato pant are growing gangbusters on the pool deck

                I am very grateful fo my friend who has driven me to many doc appointments. That is a loyal, supportive friend.
                Attached Files
                Last edited by Sunshine; 05-11-2019, 06:12 AM.

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                  Ankle spasm at 2 am this morning. Dang it. Resolved with pressure. Wondering if maybe in my sleep I am turning my ankles to and fro and it triggers a spasm. During the day, it surely is a risky maneuver.

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                    IVIG All day today...see you tomorrow. Hope it is an easy one. NEed the boost it gives.

                    I heard that Klonopin is used to treat SPS. I will ask doc about that next visit in July.

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                      Only see your doc in the morning for better care:

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                        Infusion went well. Took Ativan at 8 am and at 130 a.m.

                        At 4 phd my foot was smapsiming but not overwhelming.

                        Discharged to DH. In te aback of th car, I seethed out and asked him to insert the 1.2 mm Valium in the recipe.

                        So far so good.

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                          After IVIG ankle spasm— tried a few maneuvers. worked find. The rec discharge and she if nay owrlse with the atest efface.

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                            As I left the IVIG building, I had a terrific ankle twist spasm. Even though had Ativan at 1:30 pm that day for the IVIG, and had it also at 8am. It settled down in a few minutes. Got into car with DH and it greatly worsened. Did Rectal Valium gel and it stopped it.

                            Then, this morning,had a bad spasm at @2am, unable to walk. settled down in 5 minutes. Then at 5 am very aggressive left leg spasm: unable to walk...Took Ativan. It worked in 20 minutes.

                            I have put email out to doc about this morning. Had already told him about yesterday. I am thinking it was payback for forgetting my 2:30am 30mg Baclofen dose early yesterday morning...still could be...Yestrday before these crippling spasms, He Had told me to stay the course, and not take the missed dose...

                            Scared. No drive today, no swim today, just lay low until I have a path. He gets back pretty fast to me.

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                              I hope that today is better, Sunshine.

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

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                                Thanks ANN.

                                I swam 1/4 mile in 15 minutes. Still don’ttrust Legs after those massive spasms Mon-Tues.

                                My legs still do not feel right since those IVIG spasms that night. They are tight, painful.

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