I Have Stiff-person Syndrome

A Stiff-person Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Stiff-person Syndrome. You're not alone. 46 People

    11 yrs ago I was a custodian at a local

    Christian School! I was walking from the main office to the gymn when, out of nowhere, my legs and arms began to feel as if someone was pulling me down! I couldn't take another step and I couldn't raise my arms! I ended up on the ground with leg cramps. then, my chest, back...
    terryb47 terryb47
    51-55, M
    Mar 16, 2014

    im sixteen and was diagnosed

    when I was twelve I cant find anybody who understands or is going through something similar and none of my ''normal'' friends or family understand
    mbpponcik16 mbpponcik16
    18-21, F
    Jun 7, 2015

    Mother That Just Dont Know What Else To Do

    Hi my name is Teresa I have a daughter that is 35, she started off with type 1 diabetes 4 years ago then she got seizurs, now the have told us she has sps she was able to use a walker, but now she is just in a chair, she has 3 children I had to move in with her to help out my...
    nanamat nanamat
    2 Responses Nov 28, 2012

    A new information website has been developed

    for stiff-person syndrome to educate, empower, and advocate. www.thetinman.org
    TheTinManOrg TheTinManOrg
    Jan 2, 2015

    My partner was diagnosed with Stiff Person

    Syndrome in July 2014. Due to my own ignorance about the illness and my own selfish needs of refusing to accept her sudden disability, i lost the love of my life. I have spent the last two months in isolation, doing some soul searching and I realized that I can not lose her...
    GeekyGirl82 GeekyGirl82
    31-35, F
    Jan 12, 2015

    Just Diagnosed With The Scary Sps

    I'm 48, recently diagnoses with sps and probably have had low grade sps for 20 years based on spasms and back issues. Today my limbs and back are a little stiff, not yet to the point of handicap. I also have some issues with feeling a deep coldness in my hands. I was diagnosed...
    kromagnonman kromagnonman
    2 Responses Jan 22, 2013

    Roniedea-fed Up W/docs!(my Initial Post)

                             I have been fighting one doctor or another since I was a kid! Their general consensus was that it was in my head, how many of you have heard that one, right? I started having unexplained pain in the sixth grade. Through the years I've heard...
    roniedea roniedea
    2 Responses Jun 18, 2012

    Stiff Person Syndrome And Cymbalta

    Hi, I have had SPS over 20 years. I have used yoga, tai chi and messages to co bat this problem with little success. As a pharmacist for over 30 years, I decided to try cymbalta. Within a short period I started to get relief. Although this may not be for everyone, I STRONGLY...
    rpil6776 rpil6776
    2 Responses Aug 28, 2012

    Stiff Person Syndrome: An Alien Disease

    it was oct-12 since i started feeling pain in my back. everyone including me thought it is because of some back problem. My daughter got engaged in Oct-12 itself so many wondered if this is because of mental strain, i am going through. By the time Oct-12 passed, the pain was...
    sniffsm sniffsm
    4 Responses Dec 16, 2012

    Waiting On The Numbers...

      My name is Angela and apparently I am new to this site. I have been sick/down/however you want to describe it for over 13 years now. First I was diagnosed with a brain tumor--no that's not it, then with Arnold Chiari Malformation I--hmm...we don't think that's it either...
    tryingtorelax tryingtorelax
    51-55, F
    3 Responses Sep 28, 2013

    At least that is the best fitting dx

    so far. My problems began way back when in 2000, but came to a head in 2012 when I had a very stressful situation and a flu shot about the same time. I very soon started experiencing low back pain that worsened throughout the day and worsened every day for 2 mos. until it was...
    deleted deleted
    Mar 10, 2016

    Newly Diagnoses SPS

    Hi everyone. I was just diagnosed with Stiff-Person Syndrome (positive GAD65 ab). Does anyone know the best forum specific to this diagnosis? Thanks much!
    2rainbows 2rainbows
    66-70, M
    2 Responses May 1, 2013

    My Journey.....

    Three years ago while preparing my 4 year old lunch I began having convulsions. After many hospital trips , falls at home and in the streets. After being told it's in your head by 4 neurologists. I was diagnosed 3 months. Stiff Person Syndrome is a battle for me and my family...
    Gieva Gieva
    41-45, F
    1 Response May 3, 2013


    My husband got sick last yr April 15th his 50th B'day. He has been in feral position for 8 Months. We have been told a lot of wrong information. We are both scared,it is such a unpredictable disease... it has made his veins bulge with thick to much Heb and was drained of blood...
    writemissi writemissi
    Jan 16, 2012

    Hi Group.

    Hey all. My name is David. I was diagnosed with Moercsh Woltman in 2000 after three years of misdiagnosis after misdiagnosis. I've been living with this for twelve years now. I finally found a good neurologist who specializes with SPS and we're working on a treatment plan.
    SpaceBum SpaceBum
    46-50, M
    2 Responses Oct 8, 2012

    Living With Stiff Person Syndrome

    I have been have really bad lower back spasms for several years never said too much because at the time 5 years ago my son (who has Wegeners) was getting married and my mother was in hospital with pancreatic cancer. Oh and I forgot to say I have one daughter who has MS. My...
    parkerthedog parkerthedog
    61-65, F
    Mar 16, 2013

    I suffer daily. I recently self published a

    book available through amazon called "Broken Body Healed Spirit". The book is available on Amazon. I hope it helps reading that there is hope!
    janhillmann janhillmann
    46-50, F
    1 Response Feb 7, 2014

    I Was Diagnosed With STP

    Hi my Name is Tony and I am 40 years old and had my own Tractor Trailer and in 2006 I started getting leg pain real bad would keep me up all night and interfered with my business . And My Family Doctor recommended that I get a MRI of my Lumbar because I have been driving for...
    Classictrck72 Classictrck72
    41-45, M
    2 Responses Aug 7, 2013

    I was diagnosed with sps in 2012 i'm 45 years

    old. My mother was diagnosed around the same time. Yes my mother, in which every report I've read that it does not run in families. They haven't met my family. But my question is and it might sound silly, but both my mother and i have Not had a cold in years. I was wondering...
    walawala1 walawala1
    46-50, F
    1 Response Mar 14, 2014

    Live Day By Day With Sps

    I am 49 years old and been married to my wife for 30years. with out her i don't know what i would do, i live with pain from about 1995 on, i have been on every thing doctors could thank of . i have pump now and  love on  100 mg a day of diszepam and morphine 120 a day and just...
    farnaway40 farnaway40
    2 Responses Jun 14, 2011

    I was recently diagnosed in December 2013.

    I have been doing Ivig infusions ever since. I am on baclofen, iron, meclizine, cymbalta, lexapro, suboxone for pain, toradol, vimovo, and steroids. I have to do infusions tomorrow and I hate the way they make me feel the first few days, but they do work. Not as many jerks at...
    CatFlag CatFlag
    36-40, F
    3 Responses Jul 23, 2014

    23+ years ago I was diagnosed with MS,

    even though I never had a positive test. No blood test, MRI, spinal tap,etc was ever positive for MS. My symptoms were never an exact match either. I used to tell people I had some kind of variant form of MS because my symptoms were different. For 20 years I would go on line...
    bonsaigirl bonsaigirl
    61-65, F
    1 Response Jun 29, 2014
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