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    Stiff Person Syndrome and MS

    Hello fellow warriors,
    You might remember me from years ago when Biogen sold faulty batches of Avonex. And they told the FDA it wouldn’t harm anyone. So, patients like myself unknowingly injected it.

    Anyway, my MS hasn’t been cured but remains manageable. Recently I was also diagnosed with Stiff Person Syndrome. A blood test revealed it and history confirmed it. If you have severe spasms, ask for a GAD65 blood test.

    It’s very rare, one patient in a million gets it. So, 350 people in USA.

    So, it’s hard to exchange info and support! There is a FB page, but bulletin boards such as MSWorld are a nice organized way instead of free flowing. And FB is not anonymous.

    Thus, I have started a Stiff Person Syndrome sub -forum at the Braintalk bulletin boards. I think it’s not allowed to post the link here, but google should work.

    It’s not the archived dead SPS at Braintalk. It’s my new one I started yesterday. If you know of someone with Stiff Person Syndrome, please send them over.

    MSWorld continues to be a great forum for MS. , as we all know

    #2
    Thanks for your post it was very interesting. I've read about Stiff Man Syndrome years ago
    when I was going through the diagnosis phase.

    What made you, or your doctor, suspect Stiff Man's in addition to your MS.

    Inquiring minds need to know

    Comment


      #3
      He thought the intensity of my spasms was too severe for it to be just my MS, so he did the GAD65 blood test. Bingo. I had also said, before to him, “Doc, I think there might be more to my problems than MS”( thinking he would test for nutrition deficits like B12,which he also did) but it got him thinking outside the box.

      Comment


        #4
        If you google Braintalk Stiff Person Syndrome, the site doesn’t come up. So, just go to the Braintalk forum, and scroll down until you see Stiff Person Syndrome. There is an old archive version. Mine is the new and open version.

        Comment


          #5
          Originally posted by Poolwatcher View Post
          If you google Braintalk Stiff Person Syndrome, the site doesn’t come up. So, just go to the Braintalk forum, and scroll down until you see Stiff Person Syndrome. There is an old archive version. Mine is the new and open version.
          Or google Braintalk Stiff Person Syndrome 2018

          Comment


            #6
            Originally posted by Poolwatcher View Post
            Or google Braintalk Stiff Person Syndrome 2018
            I was on youtube and found this recent webinar at the RMMS Center that includes stiff person syndrome. I remembered this thread and thought someone might find it interesting. FYI, I haven't watched it.

            Comment


              #7
              Oops, forgot the link:

              https://www.youtube.com/watch?v=KZns16Gcgv8

              Comment


                #8
                Thank you. Will watch it later today.

                Comment


                  #9
                  Here is the link for Stiff Person Syndrome if it’s allowed

                  http://www.braintalkcommunities.org/...erson-Syndrome

                  Comment


                    #10
                    I was very interested in this. I have very bad leg spasms. My husband. nurse, or nurses aid can't touch my leg without it spasming. So I google it and just got done reading about it.

                    It just mostly affects my left leg and I saw one of the treatments was IVig, I was on that about 12 yrs ago and I did really well on that. Right now I take 80 mgs Of Baclofen which does not help much, I been on Baclofen since being diagnosed 30 yrs ago. I have been on other spasms meds which did not help so back to Baclofen

                    I might just ask my doctor for a blood test.

                    What meds are you on?

                    Shoo
                    Shoo

                    Comment


                      #11
                      Originally posted by Shoo View Post
                      I was very interested in this. I have very bad leg spasms. My husband. nurse, or nurses aid can't touch my leg without it spasming. So I google it and just got done reading about it.

                      It just mostly affects my left leg and I saw one of the treatments was IVig, I was on that about 12 yrs ago and I did really well on that. Right now I take 80 mgs Of Baclofen which does not help much, I been on Baclofen since being diagnosed 30 yrs ago. I have been on other spasms meds which did not help so back to Baclofen

                      I might just ask my doctor for a blood test.

                      What meds are you on?

                      Shoo
                      I take 70mg Baclofen and 22 mg Tizanidine daily. The side effects are tough but tolerable and better than spasms. MMJ reduces stiffening @20%, but not spasms. I also do 30G IVIG alternate weeks.

                      SPS affects mostly my legs but especially my right leg. Had a spell of dysphagia last year. Sometimes it tightens my midriff. Sound is very unpleasant. Excitement causes stiffening.

                      Your description is def suspicious for SPS.

                      Do get the blood tests and let’s keep talking. Join me at the Stiff Person Syndrome message board, link above. So far it’s just me there, but lots of lurkers. It’s so rare, 350 people in USA , that it seemed a good idea to have a dedicated message board. FB is not anonymous. I like the anonymity of message boards like MSWorld and Braintalk.

                      Comment


                        #12
                        Thanks for positing this. My spasticity issues have been mostly trunk and upper thighs/hips. I will bring this up with my doctors. I'm not sure that they will follow-up due to how rare it is, but at least I can do my own research now.

                        Comment


                          #13
                          Originally posted by IntrinsicEcho View Post
                          Thanks for positing this. My spasticity issues have been mostly trunk and upper thighs/hips. I will bring this up with my doctors. I'm not sure that they will follow-up due to how rare it is, but at least I can do my own research now.
                          I would insist on it if it were me. Tell them I have MS and SPS. Insist on the blood tests.

                          Comment

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