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Diagnosed last Wednesday

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  • Diagnosed last Wednesday

    Hi,

    I was diagnosed with IC last week. I don't really know how long I have had this condition, but last fall, maybe around October I had been feeling very "uncomfortable" espicially while sitting. By the first of December I was completely miserable and ended up eventually at a urologist last week. He used a cystoscope to diagnose the IC. He gave me a perscription for Elmiron, but told me that if the cost was too prohibitive that I could have DMSO instillations, he would do one once a week for 3-6 weeks to see if that helped. In reading about DMSO here on this website I learned that it is very painful and could even do damage in the long run.

    Elmiron is very expensive, even with my insurance it would be about 120.00 a month, and that is supposed to be for the rest of my life.

    Now I am very confused. Will this condition get worse if I try to contol it naturally with diet and the other techniques, or does it require medications?

    Has anybody been helped by DMSO? The cystoscope was very painful, I don't think I could go through that kind of pain again, especially if I had to hold it for 15-20 minutes.

  • #2
    Hi and

    IC usually doesn't progress, but you should take steps to control the symptoms. Diet is a great start -- many ICers find they can control their symptoms largely through diet alone! Have you read the Diet section of our Patient Handbook at http://www.ic-network.com/handbook? It's very helpful when beginning an IC diet and can help clarify what can be eaten and what can't. However, keep in mind that you may be able to tolerate things that someone else can't. We usually suggest sticking with the "Usually OK" foods for a few weeks to see if you improve, and then beginning to add back foods from the other lists slowly, one at a time, to see if you can tolerate them.

    As for DMSO, I wasn't helped... but I'm sure someone who felt it helped will come along soon!
    ****
    Jen

    *Diagnosed with severe IC in 2004
    *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
    *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
    *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

    **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

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    • #3
      It sounds like you're "lucky," only because it seems like your doctor was slick enough to catch it early. This can be a "good" thing (and all these quotes are for relativity, since nobody's lucky to have IC), because it means that you can start treatment early.
      If you look around the boards, you'll find lots of people who have tried, with varying degrees of success, alternatives to elmiron like glucosamine, MSM, and freeze-dried aloe vera. This stuff helps some people, and others not so much. It will depend just on how you react.
      Diet will hopefully make a huge difference also. I've only been on elmiron for two months, which is probably not long enough for it to work, but I've had a tremendous amount of improvements just by watching what I eat, and perhaps from the glucosamine w/msm that I take. I don't plan on taking elmiron forever. The diet's tough at first, but it's easier to stick with once you start feeling better, and over time you can begin to experiment with things to see what you can or cannot have. Hopefully, if you did catch this soon enough, you can be more permissive than maybe you originally expect.

      Comment


      • #4
        Hello and to the ICN.
        Sharon

        Shopping??? Did someone mention shopping? I'll get my hat... ;-)

        Where I can be found most days.



        Link to the ICN Patient Handbook:
        http://www.ic-network.com/handbook/

        Link to the IC Diet:
        http://www.ic-network.com/diet/


        IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

        Comment

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