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    Stiff man syndrome?

    Hi!
    Anyone out there with stiff man syndrome? I have MS (and myasthenia gravis), and have just been told by my neuro that I may also have stiff man syndrome. (sometimes apparently called "stiff person syndrome"). I seem to have hit the jackpot in rare disorders.....(with my luck, maybe I should play the lottery?) Just wondering if anyone else has this too, or has any experience with it?
    "I know God will not give me anything I can't handle. I just wish that He didn't trust me so much."
    ~Mother Teresa

    #2
    Hello BethM.
    I'm sorry you've had this diagnosis in addition to the others. Perhaps you should play the lottery!
    I've read about Stiff Man Syndrome and have suspected I may have something like it in addition to MS as I have severe spasticity in my torso and neck. What are your symptoms and how did you get this diagnosis?

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      #3
      I have severe spasticity in my lower back, and into my legs. The neuro called it "increased paraspinal muscle tone" on the PT prescription. The worst is at night and through the first half of the day. I get spasms in the lower back that either keep me up or wake me up at night, and it takes until about noon to loosen up enough to function well. Unfortunately, because of the Myasthenia, I can only take low doses of Baclofen, which helps minimally. Hoping physical therapy might help! It's diagnosed by a blood test, (I think the antibody they look for is called GAD), though I think it can also be diagnosed by EMG. Wouldn't wish it on anyone....hope you don't have it too!
      "I know God will not give me anything I can't handle. I just wish that He didn't trust me so much."
      ~Mother Teresa

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        #4
        Thanks so much for the very informative post! I also had bad lower back stiffness at diagnosis. I'll ask my doctor about that blood test. Thanks again!

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          #5
          Sure hope mine is from my M.S. spasticity...I never really get a 'break' from the stiffness, especially early in the day. having had back surgeries, makes me curious.

          My knees were stiff and I received fake ones. When they were stiff this year, it was "M.S." So, I'll ask about that too.

          My MS hug prevented my lungs from expanding and I went to the ER in 2009 and a few more times, unable to "Suck Air In!" Was told 'allergies.' 2012--M.S. MG has been ruled out!

          Thank YOU for passing on this info. I have tons of difficulty moving unless I take an opiate or medicated coffee with mmj -
          We associated it with spasticity/M.S.
          fed

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            #6
            http://www.msworld.org/forum/showthread.php?t=104767

            Forgot to ask the doc. But, VERY curious of this disease. I took some Sinemet for my RLS and realized my stiffness turned into spasms and then slight tremors and then relaxed.

            But came back when the med wore off. Just like it does with medicinal marijuana; except a specific strain of mmj can last much much longer for me.

            Sinemet is for Parkinsons and my doc gave it to me for RLS. I ran out and didn't think it was working that well and took one Wednesday night and didn't take the rest of my meds to determine what it does.

            It works for the severe stiffness..just the spasms after it wears off, drives me nuts now. fed

            Comment


              #7
              Yes..starting botox for SPS

              Originally posted by BethM View Post
              Hi!
              Anyone out there with stiff man syndrome? I have MS (and myasthenia gravis), and have just been told by my neuro that I may also have stiff man syndrome. (sometimes apparently called "stiff person syndrome"). I seem to have hit the jackpot in rare disorders.....(with my luck, maybe I should play the lottery?) Just wondering if anyone else has this too, or has any experience with it?
              *********************************************
              I've been living with the diagnosis of focal dystonia for close to 20yrs..to keep this short, this year I've been told it is Stiff Person and getting right on the botox. I'd follow thorough with your situation..down right overwhelming I know..but I feel better emotionally right now. Good luck to you...yeah, play the lottery!

              Comment


                #8
                Yale Med School url for Stiff Person Syndrome

                I realized in my last post I didn't give any information or direction regarding SPS. I cannot post the url but just search Yale Medical School and then type in neurology, movement disorders or stiff person syndrome.
                I am at this time, like I said in my first post, going to get the Botox shots.

                I dislike having to use meds so I've been doing Mindfullness therapy which is mixing talking if one wants to and also just quieting down; I guess one could call it meditation..all I know is my anxiety went way down in my first session and I walked (I use a rollater ) for the first time in months without stiffening up. It was a long walk: over 12 blocks!

                I highly recommend this mind body connection & there are many different approaches/therapies. My being quiet made me feel as if the body was going to spaz or get ridged on me and it was quite the opposite, though I must admit there was the feeling that the body was uncomfortable just relaxing. This could be particular to me because my jabbering tends to not let me go to deep into my emotions. And that we can trigger our symptoms but, again for me, unlike talking, this releases the emotions with no intense trying to figure them out.

                I wish everyone the best within your moments of life..

                Comment


                  #9
                  BethM,

                  I sure do hope that PT will help you. Be sure to do your "home work"
                  Live simply. Love generously. Care deeply. Speak kindly.

                  Comment


                    #10
                    Yes, I have both MS and Stiff Person Syndrome. I have started a sub forum board at Braintalk bulletin boards. There are only 350 people in USA with SPS and having a dedicated forum for sufferers of SPS could be so beneficial, swapping ideas, experiences, tips, support.

                    Meanwhile, MSWorld is excellent for MS

                    Comment


                      #11
                      Mindfulness based stress reduction

                      Originally posted by MaryEdna View Post
                      ... I've been doing Mindfullness therapy which is mixing talking if one wants to and also just quieting down; I guess one could call it meditation..all I know is my anxiety went way down in my first session ...
                      John Kabat-Zinn pioneered a program called "Mindfulness based stress reduction" at U Mass. medical center. You can find lots of videos of him speaking in YouTube.

                      Comment


                        #12
                        I too have been wondering about the SPS thing. When I sit for even a short period these days, the muscles in my legs tighten up and I walk like a 'tin man' until it all loosens up again and I have a lot of muscle rigidity in my thighs at times. I've also had what we thought was an 'MS hug' but have lately been wondering if this might actually be SPS.

                        There is a really good FB stiff person group and it seems that a lot of people on there are being treated with IVIG to slow the progression of it.

                        Comment


                          #13
                          I have MS and Stiff Person Syndrome and thus started a SPS forum
                          http://www.braintalkcommunities.org/...erson-Syndrome

                          Itís got a lot of good info. Like MSWorld, itís anonymous, which is important to me, as I donít want my personal FB page announcing to the world my struggles. Itís why I also like MSWorld for my MS.

                          But the FB page is def good for reading other peopleís struggles.

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