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    #31
    Just finished my infusion and had to back off the rate to 50, had horrible chills, shivering, leading to spasms but things have settled down. Rough day! Hoping it continues to help. This cold front is not helping.

    Sunshine, thabks for the information. I am already a member of the Facebook group. In fact I think that is where I saw the link to this forum.

    Sunshine I hope this round does well for you.

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      #32
      That sounds rough KickingIt... I had that when they increased from 30 to 35 and it is no picnic indeed.

      I am interested in your cold front experience. I too have noticed I do better when it’s not cold.( Which is puzzling as I do worse with MS symptoms in the heat)

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        #33
        This was a day of plenty of stiffening. I don’t know why. The MMJ seems less effective than usual. The doc said that. OST people eventually develop resistance to it. So you have to stop cold turkey for two days, then slowly restart it, to give the cannibis receptors time to regenerate.

        I hope that’s not the case. It wouldn’t be fun to go back to severe neuropathy. Let’s see how it goes tomorrow.

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          #34
          I hope that's not the case, Sunshine, 2 days is a long time.

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

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            #35
            It was only that one day of MMJ problem. Yesterday and so far today are okay again.

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              #36
              Everyday is a challenge with SPS for sure.
              I was thinking that it’s not just the burden of the disease, but also the side effects of the treatments. The high dose of muscle relaxers creates constant feeling of rocking, tiredness, wanting to lie down and do nada.

              The constant coaching of self to move, to do what’s doable and let go of the undone.

              The vigilance against becoming depressed with such a life limiting and altering disease and therapies. The loss of self due to the cognitive and emotional impairments affiliated with lack of GABA is a definite challenge.

              Who am I now?

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                #37
                Finished another 8 hours of IVIG....

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                  #38
                  Yesterday and today are after IVIG two days ago. Yesterday was my best leg day in a while. So far today is also good. Someone said my gait looked stronger.

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                    #39
                    I read this article in WaPo on Repetitive Exercise Dystonia. It reminded me a bit of Stiff Person Syndrome, especially the rareness of it and, for many SPS patients, going from dr to dr to dr who want to write it off as psychological.

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

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                      #40
                      Only registered and activated users can see links., Click Here To Register...

                      Nice article about having a rare disease

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                        #41
                        Am going to Mayo next month for diagnostic work up.

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                          #42
                          My lightweight wheelchair arrived today. It’s a custom fit and works very well!

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                            #43
                            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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                              #44
                              All day infusion today

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                                #45
                                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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