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Thread: Stiff Person Syndrome

  1. #1
    Distinguished Community Member Sunshine's Avatar
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    Default Stiff Person Syndrome

    Good morning!

    You may be in the process of figuring out if you have Stiff Person Syndrome, or you may already be diagnosed, like myself.

    As you know it’s exceedingly rare. Current stats have it at one in a million (but my husband already knew I am one in a million), which means you may have not yet a fellow sufferer. Personally, I think it’s more since I have met another SPS patient and my area of USA doesn’t have nearly a million people. It’s like the stats on MS. Forever they put it at 400,000 in USA, a gross underestimate. They finally increased it.

    I am going to use this forum to post information about Stiff Person Syndrome to help people with it to connect, learn about it and support one another.

    There is a FB page on it. It’s useful, but the format is different, and so it doesn’t allow for the same flow of information.

    And perhaps if this becomes an active Stiff Person Syndrome site, google will find it and thus help other patients find it.

    More later today.
    Last edited by Sunshine; 01-06-2018 at 01:42 AM.

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  3. #2
    Distinguished Community Member agate's Avatar
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    Default

    This might be of interest. Johns Hopkins University seems to have a Stiff Person Center:

    https://www.hopkinsmedicine.org/neur...ome/index.html
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  5. #3
    Distinguished Community Member Sunshine's Avatar
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    Quote Originally Posted by agate View Post
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    This might be of interest. Johns Hopkins University seems to have a Stiff Person Center:

    https://www.hopkinsmedicine.org/neur...ome/index.html
    Thank you! Good sleuthing. I wonder what patient experiences here have been

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    Quote Originally Posted by Sunshine View Post
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    Thank you! Good sleuthing. I wonder what patient experiences here have been
    People in support groups I belong to have nothing but positive things to say about the doctor who is part of it. His name is Dr Newsome and he supposedly is one of the top in the country. He treats like 107 patients with SPS. My neurologist reached out to him. She had never treated a patient with SPS.

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  9. #5
    Distinguished Community Member Sunshine's Avatar
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    Wow! I will suggest it to my neuro next visit. He has treated 5 people with SPS in 30 years

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  11. #6
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    This is all what I heard, not direct experience. My PCP has treated three, but my neither of my neuros have ever treated it.

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  13. #7
    Distinguished Community Member Sunshine's Avatar
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    Here is the FB link to SPS
    https://www.facebook.com/groups/spsaonline/

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