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Thread: SPS and swallow problem

  1. #1
    Distinguished Community Member Sunshine's Avatar
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    Default SPS and swallow problem

    Like you, I have had dysphagia. Itís very distressing to be limited in swallowing, and feeling it go down, up, down, gurgle.

    It improved on its own within a month. Could return. Sometimes it feels like something is pressing on the Adamís apple.

    Then they often do endoscopy to rule out blockage, cancer.

    I know a patient with Stiff Person Syndrome who developed Locked in Syndrome from anesthesia. Lucky the doc realized what was happening.

    I am New at this, only began to crumble in Oct 2016 .

    What swallowing problems and procedures have you endured?

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  3. #2
    Distinguished Community Member Sunshine's Avatar
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    Here is a case report where patient was misdiagnosed with eating disorder. She actually has Stiff Person Syndrome and esophageal contracture making eating anxiety producing
    https://www.ncbi.nlm.nih.gov/pubmed/20186723

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  5. #3
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    I did not have any issues that I related to SPS until the end of 2016 also. Prior I just chocked up the reflux, and spasms as a side effects of all the he meds I was on. When I started having the spasms in my throat it made swallowing difficult, even my own spit at times, it comes and goes with the spasms. The Baclofen and IVIG seem to be helping.

    They have not done that many studies, a swallow test, upperGI, and endoscopy. The drs said that the Baclofen would have had no effect on the swallowing issue if it was not related to the the muscle spasms. So they said it is caused by the SPS.

    This disease causes so many strange symptoms that are different for each person and different day to day.

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  7. #4
    Distinguished Community Member Sunshine's Avatar
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    Indeed. The dysphagia was really concerning. I dropped @5% of my body weight. Being slender, it was a big deal.

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