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Are you in limbo re diagnosis of Stiff Person Syndrome?

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    Are you in limbo re diagnosis of Stiff Person Syndrome?

    So many people can wait several years before the Stiff Person Syndrome is diagnosed. They go from dc to doc, one diagnosed it and then the next undiagnosed it. One says you’re just anxious and sends to an Psychologist. It’s similar to a pattern seen in MS .

    Part of the problem identifying SPS is that many doctors never heard of it. It’s so rare, one in a million, that even if a doc heard of it, they’ve never seen a case and thinknit unworthy to pursue.

    My experience was a shock to me. I have MS. Last year I began to develop extensive painful protracted spasms. My MS Neuro became suspicious to his credit and one month later a blood test of GAD65 was grossly abnormal. And continues to be.


    It got me wondering if you are in limbo, undiagnosed, but thinking you might have SPS. If you’re reading this thread, might you register and post your limbo story.
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