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  • Would it help my case to.............

    Hi everyone - I'm new here & have a quick question. But first some background info on me - I have had IC for about 1 1/2 yrs. now & filed for disability last Feb. I am now waiting to find out when I will get my ALJ hearing. I also have fibromyalgia, advanced degenerative CMC joint arthritis in both thumb joints, severe nerve damage in my groin, migraines, back pain & just had a sleep study done because the Dr. thinks I have narcolepsy. So I've got a few things going on here.
    My question is this - would it help my case to have a couple of instillations done ? I have never had, nor has my Dr. ever reccomended me to get one done. I take Elmiron 3x a day for it but I do get bad flares here & there. I know it looks good if you have tried everything. But I have so many things wrong with me that I'm wondering if I shouldnt bother ??
    OK, I said I would make this short, Lol
    I would appreciate any input any of you might have very much. Thanks !

    Susan

  • #2
    Hi. If you are talking about DMSO instillations, I would not recommend having them. My DMSO treatments have made me worse PERMANENTLY. I would read the messages on this site under Treatments/Instillations/DMSO. People are now saying that it is safer if the percent of the dmso in the instillation is less than 25%. I know people have been helped by it, but I have spoken to several others whose symptoms were worsened because of dmso--I wouldn't try it.

    I think you have enough problems that will help your SSDI case. I too am waiting for a hearing. I will have to contact a congressperson.

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    • #3
      If the elmiron isn't working and if you are having a lot of pain, it could be a good idea for you to think of having some bladder instillations. There are several different kids of instillations --- when I was first diagnosed 28 years ago, silver nitrate was usually used. It isn't used much any more, but it did help me. I later had steroid instillations and heparin. All seemed to help.

      But --- the one that has helped me most is DMSO. I have always a solution instilled that is slightly less than 25% DMSO, which is considered a safe level. I have to admit that my first few instillations were very painful. In fact, I almost stopped them because of the pain level --- then one night I slept the entire night without even one bathroom trip. That was enough to convince me to continue. Now I have a little discomfort on DMSO day, but the rest of the time I do very well. I have been on a once a month DMSO schedule for several years now.

      Like other treatments for IC, neither DMSO or Elmiron works for everyone.

      Sending healing thoughts,
      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      I am not a medical authority nor do I offer medical advice. In all cases, 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.
      [3MG]

      Anyone who says something is foolproof hasn't met a determined fool

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