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Thread: Helping Each other with Stiff Person Syndrome

  1. #1
    Distinguished Community Member Sunshine's Avatar
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    Default Helping Each other with Stiff Person Syndrome

    Today, amyangel joined our community here . She said,

    “Quote Originally Posted by Amyangel View Post
    Sunshine! I need some people, for support and knowledge. I was diagnosed with SPS just last week. Like you, I also have MS, and was diagnosed in 2011. I am scared, mourning, and feel moments of feeling overwhelmed and hopeless. My Neuro recommends IVIG soon, and he put me on clonazepam. My legs are stiff, whenever I get anxious, the stiffness is worse. I am a 41 year old mother of 3. I just need some people who get it. Thank you for your time.”

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  3. #2
    Distinguished Community Member Sunshine's Avatar
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    Here is my response:



    Good morning Amyangel (love your username). I cannot imagine a worst time in life to have SPS than when you are raising 3 children. Please also visit the Multiple Sclerosis board on this forum, Braintalk for support. It is a group of long time MSers and you can find support there as well...

    I definitely “get it”. It is a beastly disease. Your neuro is recommending a good treatment regimen. Start as soon as possible.

    What are your supports? Do you have a supportive family or husband that can provide care for your kids when you are at your worst with these diseases?

    You are the first person I know that also has MS. I bet there are more.

    May I start a new thread for our dialogue so other SPS people can join in when they are brave enough to register as did you? They may not see this dialogue in the Keep Moving check in.

    I have much knowledge about this disease, as I have a scientific background and have been battling it for at least two years; and mild MS for 19 years and counting.

    Re mental health: This is a crucial part of treatment. Is there a therapist in your community you can see until you feel more “ground” under your feet in addition to seeking support here? I found that immeasurably beneficial. They can teach you coping tools such as mindfulness, deep relaxation. But not all therapists are equal. Find one that “gets it” and can listen to you as well as teach you these tools.

    Recently , I have been exploring Meditation: this has been of enormous benefit to me. I read a book, called Breakfast with Buddha that opened my eyes to it: its a fiction book and easy to read, very interesting. By Roland Merullo. It has really helped me as much as reading up on it, seeking support, and the therapy I had last year that calmed me down.

    Keep on keeping on, and lets keep supporting each other.

    (I like this format better than Facebook because its anonymous. So, you can say what you want without having to reveal your identity. Although FB is def another place of support)

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  5. #3
    Distinguished Community Member agate's Avatar
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    Hi, amyangel, and welcome!
    I don't have SPS but have been a regular on the MS board here for many years and hope you will join the MS board as well as this SPS board.

    I wonder about the ages of your children. I hope they're getting old enough to be helpful.

    Sunshine is so right about the importance of staying calm in the face of neurological "challenges" even though they are daunting.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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