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Thread: Facts about Stiff Person Syndrome

  1. #11
    Distinguished Community Member Sunshine's Avatar
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    Factoid #7

    The zebra stripe ribbon for Stiff Person Syndrome refers to training in medical school where they teach future doctors that “when you hear hoofbeats , think of horses, not zebras! “

    In other words, if a patient is having severe spasms, think of dystonia, nutritional deficits, multiple sclerosis. Do not even think about it being stiff person syndrome. This delays the diagnostic process unfortunately.

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  3. #12

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    I have an even more rare form of SPS. My variant is called Jerking Stiff Man Syndrome. And there are others!! I have found people all over the world with Stiff Person Syndrome; I just have yet to talk to someone else with my variant. And yes, we want to talk and reach out to others when we are able! I have a Facebook page called Stiff Person Syndrome Support Group USA, if you are interested!

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  5. #13

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    Quote Originally Posted by Sunshine View Post
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    Factoid #7

    The zebra stripe ribbon for Stiff Person Syndrome refers to training in medical school where they teach future doctors that “when you hear hoofbeats , think of horses, not zebras! “

    In other words, if a patient is having severe spasms, think of dystonia, nutritional deficits, multiple sclerosis. Do not even think about it being stiff person syndrome. This delays the diagnostic process unfortunately.
    I have found that is true, and with our average of 7 years to be diagnosed, it is really frustrating! (My diagnosis took more than 20 years!!)

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  7. #14
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    Welcome scribblesdizzles! Great name BTW

    Yes, good job on making the FB site. I go to as many SPS sites as possible including FB. Each seems to offer something unique. I read onthe two FB sites :) people do a nice job of supporting one another.

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    wrong thread
    Last edited by stillstANNding; 02-05-2018 at 07:16 PM.
    There comes a time when silence is betrayal.- MLK

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  10. #16
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    Factoid #8

    Despite its rarity, there is serious research on SPS. In http://www.igliving.com/magazine/art...n-Syndrome.pdf , it talks about very current research in progress on stem cell cures for Stiff Person Syndrome:

    Re the researching stem cell transplantation for SPS. Th article says there is “great hope ...being placed on auto-HSCT, with Dr. Georges presenting in May at the American Society for Apheresis 2017 Annual Meeting on “Autologous Hematopoietic Stem Cell Transplantation for Autoimmune Neurologic Diseases: Multiple Sclerosis and Stiff Person’s Syndrome.”
    Last edited by Sunshine; 02-06-2018 at 01:37 PM.

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  12. #17
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    Fact #9

    Many people with Stiff Person Syndrome experience much less pain and stiffness during a nights sleep.

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  14. #18
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    Fact #10

    In general, people with Stiff Person Syndrome “experience more symptoms and falls during times of physical or emotional stress, cold weather, and intercurrent infections.”—https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3335758/
    Last edited by Sunshine; 02-09-2018 at 01:07 PM.

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  16. #19
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    Fact #11

    There are some rare forms of Stiff Person Syndrome that are due to Paraneoplastic Syndrome. The person has a cancer and might not know it yet. The immune system Ramps up to fight the cancer and goes haywire attacking other organ. In SPS case it’s the central nervous system: brain and spinal cord.

    https://www.mayoclinic.org/diseases-...s/syc-20355687

  17. #20
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    Fact #12

    Due to insufficient GABA, emotions such as excitement, anger, happiness etc cause muscle stiffening. The pain from that can cause a person with Stiff Person Syndrome to isolate self from social situations, causing loneliness and depression,

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