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    #61
    The Baclofen is dehydrating my skin, especially hands and oral cavity. Will see doc to discuss what can be done if anything.

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      #62
      hi i am new here hoping someone can help. I have sps was diagnosed a year ago and right now am getting second round of plasma thesaurus theapy. The fist time i had it, it didnt even last for 6 month and this time my numbers are twice as high as fist time i am scared and need help any help.

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        #63
        Originally posted by dee27 View Post
        hi i am new here hoping someone can help. I have sps was diagnosed a year ago and right now am getting second round of plasma thesaurus theapy. The fist time i had it, it didnt even last for 6 month and this time my numbers are twice as high as fist time i am scared and need help any help.
        Hi dee, and welcome!
        What does your neurologist think?

        And by numbers, what numbers are you referring to? The GAD65?
        How do you feel on this second round. Are you getting any symptom relief?

        This disease and it’s treatment are so hard scary and demoralizing for sure.
        Last edited by Sunshine; 06-05-2018, 10:18 AM.

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          #64
          IVIG all day today.

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            #65
            I hurt my back last Oct lifting a wheelchair.

            I began to try chiropractic care in Feb. it helps immensely, and then slips back within two days, it’s holdong longer than originally though.

            I am suspicious that the muscle stiffening from SPS is pulling the back and sacral joint back out. The chiropractor seems to feel its unlikely but that it’s possible, but I hope it eventually resolves.

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              #66
              I read on Facebook SPS website that the woman was told for 7 years she had a conversion disorder (meaning sochhokogicisl cause of her illness, that the spasms were due to unresolved psych issue)...turns out it was SPS.

              There are too many lazy docs who just blame the patient for their illness. Usually they say “stress”...

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                #67
                IVIG all day long today.

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                  #68
                  In creating a handicap accessible house, so many details to think about. Building an accessible pool as water based activity is only aerobic activity that’s doable. The public pool has accessibility issues.

                  This pool is steps from the living room. Literally. Today will see if I can bend my body to get under lane divider.

                  Such a weird debilitating illness. Still hard to believe it’s really happening to me.

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                    #69
                    I had one of those creepy foot and ankle twists at 3 a.m.It eased up within a minute. But the whole time, I a, wondering whether it will ease up, spread to the toes and legs .....

                    I am sure others here with SPS can relate to that.

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                      #70
                      Sorry to hear about the ankle twist, Sunshine. Can you relate it to anything you do, don’t do or a med that you take or skip? Any pattern?

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

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                        #71
                        No, I can’t tie it to something.


                        I woke up at 1 a.m. today again with ankle spasms pulling my feet sideways. Oof. Took Tizanidine.
                        By breakfast I was okay. So, with trepidation, I went surfing

                        It was a repeat of yesterday. I can see my body healing somewhat— my pop up is better, and my balance on the board is better. I was able to take a couple of steps on the board too. I got manywaves , by resting every 10 to 15minites to settle down the muscle tension.

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                          #72
                          I am doing an all Day IVIG tomorrow. So, I won’t be updating on this forum.

                          We have readers here. I do wish some might post! They likely have valuable things to say !

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                            #73
                            Yesterday, I was joking and laughing with my husband and feeling like I used to feel. It was nice to have that carefree feeling back even if it was for a short time. Maybe the stiff person syndrome is continuing to improve…

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                              #74
                              I am doing an all Day IVIG tomorrow. So, I won’t be updating on this forum.

                              We have readers here. I do wish some might post! They likely have valuable things to say !

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                                #75
                                My youngest is in town for the weekend. We are having a good visit. Low key, SPS friendly weekend. Keeping noise manageable.

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