Hello @pattygail, I’m hoping others with the condition will answer your question. I have found a few sites that may give you the information you are looking for. CNN had a story in 2014 on stiff person syndrome – http://www.cnn.com/2014/02/05/health/stiff-person-syndrome-irpt/. There is also a site that provides the progression and stages of SPS – http://thetinman.org/progressionandstages.html. Please don’t give up hope!

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