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  • jayess
    replied
    Re: Ec

    Hi Smlye,
    I've said earlier that I've just returned to this board. Anyway, how is your daughter doing? I remember talking with you a few times and some of the things you were contemplating for her health. If you see this, would you please let me know how things are for her and for all of you? I'm retired now and trying to get to things that I've put off for years. One is being on here. I hope you get this and I'm praying and hoping for a positive response!

    Jim (jayess)

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  • smyle
    replied
    Oh my God, today you are an answer to the prayers we have said in our home for nearly a solid year. Our daughter was diagnosed with EC last October at the Mayo clinic. She is only 14 years old and she has tried every single treatment we have been told to try without any relief. She desperately needs to talk with anyone who has this disease. I am begging you to reply as soon as possible.

    Sincerely Annette Smyle-Krinke, Chloe's mom

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  • Jen_Cole
    replied
    There are a few people on here that have EC that seem to be quite proactive in their treatment. I, however, am not one of them, lol. Nothing ever worked for me for very long, but it doesn't bother me too much anymore. I think I've just gotten used to it, and I am fortunate enough not to have experienced any severe bladder problems. That's strange how you said your frequency occurs more at night. I would think you would go less frequently then, as you are not drinking. I go all the time at night-but that's because I'm 38 weeks pregnant, and I'm drinking immense amounts of water since it's so FREAKISHLY hot at night!

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  • jayess
    replied
    Hi Donna,

    I just discovered the EC board, and I thank whomever immensely for starting it. Looks as if there's not much (lol) there yet, but hopefully there will be. I'm still looking and will post anything I find.

    Thanks,

    js

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  • ICNDonna
    replied
    There isn't a lot of information available, but you can find some at http://www.ic-network.com/ec/whatisec.html And hopefully you'll hear from some folks who have this diagnosis.

    I will also copy this to the Just for EC board.

    Donna

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  • jayess
    started a topic Ec

    Ec

    I was recently diagnosed with EC, and I can't find much at all about the treatment or "cure". I've found all of the details. I think I got it from taking hydrocodone with acetamenaphin for 3 1/2 years as the result of an accident. I no longer take the medication, but I definitely have EC. So far, the only symptoms are frequency, especially at night. I've taken Detrol LA and I still wake up at least twice every night. I'm looking for ANY more information on this disease or condition. Does it, or how does it, progress? The last hopeful treatment I found was published in 2002. Any comments or suggestions, or anything would be helpful.

    I wish the best for all other sufferers!!!

    jayess
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