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    Stiff Person Check In

    This is a thread to check in about whatís going on with you.

    Right now am dealing with stiffening. Likely because I did more than usual. When I feel pretty good, I always overdo it because there is a delayed reaction until I hit the tipping point, when the whole house of cards collapses.

    It was good to lunch with an old friend today. I paid for it with stiffening. Itís so easy to get isolated, not wanting to risk spasms by seeing people.

    How about you?

    #2
    I am working on that this year myself. I realized I had shut myself off from everyone this past year. By Dec was beginning to get really down and discouraged as to what I was fighting for. Hoping for more time with friends and family. More laughter. Got to pace myself as I tend to over due same as you. Good luck on finding that happy medium.

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      #3
      Welcome kickingIt!

      Glad to see you here, not glad you have Stiff Person Syndrome.

      It’s such a curiosity to be sitting and enjoying a friend’s company, while the stiffening increases with each moment of fun. All I can think about is getting home and isolating from the restaurant noise, and excitement.

      But as you know, isolation brings a new set of problems.

      I hope you can continue to share your experiences here. Seems like the more people share SPS exoeriences, the more tips we can share. And just sharing exoeriences somehow makes me feel less crazy for having bizarre symptoms.

      Today I will see a doc, pick up a book af the library, and then make a simple dinner. To get back to baseline.
      Last edited by Sunshine; 01-09-2018, 08:40 AM.

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        #4
        There I was at the radiology clinics for bone density.

        If you have one, they’re a piece of cake, unless you have Stiff Person Syndrome. Lying on the table, the THC gently rotates the ankle. One of my worse SPS locations.

        So, I feel the ankle tightening and wanting to spasm. “How long”,I asked. “Not long, just a minute”— that minute felt like a year. The muscle kept trying to decide whether to go from stiffening to full on spasm.

        Whew! Minute was up, and no worse for the wear.

        I mentioned that there are 350 people in USA with SPS to the tech. She casually and knowingly commented, “bet there’s a lot more than that walking around and don’t know they have it”... word.

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          #5
          My 8 hour infusion was today. Apparently there is a national shortage of saline bags. They’re made in Puerto Rico and Irma destroyed it.

          Hospitals are running short. That’s not good in flu season.

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            #6
            ((((((BBS)))))) ~

            I hope that your infusion went well and that it will benefit you in many healing ways.

            Thank you for sharing the information regarding the saline bag shortage. This is alarming and quite concerning for everyone. It hits home for us, since Jim is a chemo patient and will likely start chemo again in the next couple of weeks. Additionally, Jim and Jon are medically fragile, and if they become ill needing hospitalization, saline bags will be crucial to their treatment and recovery.

            Here's a link to a story about the shortage:

            Only registered and activated users can see links., Click Here To Register...

            My first thoughts are:

            Why is there only one producer of saline bags, instead of several companies in various locations manufacturing them?

            As soon as Irma began to approach Puerto Rico, why didn't the powers that be immediately look for other options for producing saline bags? It couldn't be a surprise that PR was demolished by Irma. And once it was clear that PR was a catastrophe, that was the time to trouble shoot saline bag production. That was August 2016!

            According to the ABC news link, it could take a couple more months to get production of saline bags from a different source. Meanwhile, the flu is rampant, and the first thing ER does is hook an IV for saline drip to re-hydrate flu patients! They can't wait 2 months!

            Where was the planning ahead for this crisis?

            This is unbelievable! And unacceptable! We're not a Third World country! Are we?

            I apologize it I am hijacking your thread here. I just wanted to respond to this avoidable crisis with saline bags. Even those of us, who don't need them now, never know what tomorrow may bring. If it brings a need for a saline drip, we all need to feel confident that one will be available for us.

            It's great that you've initiated the SPS forum, BBS, and you are doing fantastic work in creating an informative forum.

            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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              #7
              Thanks for your encouragement and info! There are so few people with Stiff Person Syndrome that it may be hard to get thenforum up and running, but not for want of trying!

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                #8
                Yesterday It took much longer to recover from my ocean adventure both for MS and the Stiff Person Syndrome. But it was worth it.

                I am fighting hard the comfort of isolating myself from being around people and public places. The muscle stiffening increases outside of my home and around other people and sounds. But the isolation brings a new set of problems.

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                  #9
                  Skipped swimming today due to chilly windy air. Before SPS , and with only just MS, would swim in this weather. Since SPS seems like I start to shiver uncontrollably. Uncomfortable and scary.

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                    #10
                    I made it my goal last night to venture out into public every day despite pain, and to find opportunities to meet up with a friend despite it causing stiffening pain.

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                      #11
                      Every day is a high bar, BBs. Good luck.

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

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                        #12
                        My muscle relaxers, Baclofen and Tizanidine, have side effects of feeling like I am rocking on a boat all day. I hate it, but there is no way around it.

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                          #13
                          Today is my 8 hour IVIG infusion.

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                            #14
                            The IVIG went well. Very competent nurses there.

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                              #15
                              Although the IVIG went well yesterday, last night at 4 a.m. got one of those leg twisting and foot twisting episodes. The scary part is that when it happens you don’t know if it will release or go on and on. Mine released seconds. I won’t swim today . Too risky,

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