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Final diagnosis, and it's not good news - dysautonomia

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  • #16
    Y-gwair,

    My skin also became very dry and crepey around the time that I started having spells of focal hyperhidrosis, after never having sweated before. I was diagnosed with an Heritable Disorder of Connective Tissue, NOS, last week by a great geneticist. I think she's going to end up being a big help to me. Doc said it could be Ehlers-Danlos but she's leaning toward thinking it may not be EDS. I'm to have a standing MRI and echo and send her more records (eyes and hearing). The neurological exam she did revealed a lot of problems, so not sure if that is where my EM is coming from or the Mast Cell Activation Syndrome she suspects I have. She prescribed some meds for MCAS to see if it helps with everything or anything.

    The geneticist was very interested in my various eye problems, but didn't specifically comment on the mechanism behind my eye dryness. She did mention that I have gray sclera. I now have a weird white bump on my eye and I don't know what it is. Doesn't affect vision or hurt though so I haven't rushed to the eye doc, but probably will have to go since it isn't going away.

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    • #17
      Botox has been used successfully to treat several muscle and nerve disorders. This is something you should ask your doctors about. It could be injected instead of the anesthetic nerve block.

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      • #18
        Originally posted by willwork4tears View Post
        Botox has been used successfully to treat several muscle and nerve disorders. This is something you should ask your doctors about. It could be injected instead of the anesthetic nerve block.
        Supposedly, topical (gel) botox will be available in 2013. There are some issues regarding how well it works compared to injectable botox. However, for someone who needs nerve and/or muscle treatment (that has nothing to do with cosmedics), this may be an option.

        I am also slightly curious if a little topical botox could help people with dry eyes at all. For instance, maybe it would relax MGs and let oil flow???? On the flip side, I heard that injected botox can CAUSE dry eye so there would have to be some careful testing.

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