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Found out why I got the 307.89 diagnosis

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  • Found out why I got the 307.89 diagnosis

    It turns out it was because I had tried so many different treatments (ditropan, DMSO, Elavil, Atarax, Elmiron, the Bion, etc.) and none of them helped to reduce my bladder pain.

    Because of that, the doctor and psychologists/psychiatrists concluded I was not compliant with my medication - in other words, that I was pretending they didn't work just to get more medical attention.

    Remember the article I posted a little bit ago that said 30-50% of IC'ers fail to get relief from the standard treatments?

    Well, ONE treatment gave me relief - Cyclosporine-A. That is currently the drug with the highest documented success rate for IC (although it is terribly toxic and dangerous.) I DID respond to that.

    Apparently they think I somehow caused my own renal failure in order to "cause" the treatment to fail.

    How does a person defend themselves against claims like that? How on earth could I possibly prove that Elavil, Atarax and Elmiron failed to help me? Or that my kidney failure WAS due to Cyclosporine-A nephrotoxicity, and not due to me trying to take medicine inappopriately to make my kidneys fail?

    My head is just spinning right now. I am SO glad I'm going to get care in the civilian sector from now on. I just hope those doctors on base won't find some way of "warning" the civilian doctors about me. I'm not sure how best to handle the release of information thing....I really am worried those doctors back on the base will try to sabotage my efforts to get healthcare on the outside.

    Maybe they mean well - maybe they really do believe I am just "faking" treatment failures - but nothing could be further from the truth.

    You know what the base treatment plan was going to be for my IC? Refusal of any pain medication, and refusal to treat my IC with any medications whatsoever, except for those medications (Atarax, Elavil and Elmiron) which do not help me at all (in fact make my bladder irritation worse.)

    Sheesh I just hope that this "plan" doesn't follow me to the Cleveland Clinic!

    I'm hoping I will be able to stay on a lowered dose of CyA once my kidneys bounce back (I'm going to go off it for maybe a month or two to let my kidneys completely recover) and also continue to receive Ultram from my pain management doctor. With that combination, I am comfortable most of the time and I can function and have a good quality of life.

    Sometimes you just can't win if you are an IC patient, especially when you do not respond to the therapies the way the doctors think you ought to. Apparently the doctors are all pretty much ignorant of the fact that many IC'ers do NOT respond to the currently available treatments.

    Blessings,
    Lori

  • #2
    You can ask for a copy of any report sent to the clinic. I do think it could be a good idea to let the new doctor know what you've been through in the military system.

    Warm hugs,
    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

    Comment


    • #3
      Thank you, Donna. I will certainly ask for a copy.

      But I'm worried about letting any new docs know what I've gone through with the military system. If I tell them "my docs think I'm purposely not getting better on the IC meds" aren't they likely to think the doctors are right - and not offer me the one treatment (immunosuppressant) that DOES work?

      If I go and say, "the military docs all think I'm crazy" doesn't that automatically make the new doctor be on guard and also think I'm crazy?

      What possible benefit would there be to me, in terms of getting healthcare, to tell them about this situation?

      How could a person prove they did not get positive results from a med? It's simply the patient's word. I have no lab test to give them to prove I did not improve on Elavil/Elmiron/Atarax. All I have is a statistic that says 30-50% of IC'ers fail to respond to any of the current therapies available for IC.

      Blessings,
      Lori

      Comment


      • #4
        Hey Lori..

        I just hate how them doctors have treated you..
        You know you could request your files yourself and go through them and give your new doctors what you think they should have for your treatment..Then when you are able to trust the new doctor and know he will not judge you then I would explain what went on with the other doctors..If your new doctor is a good IC doctor then I am sure he will understand..

        Try to stay positive about going and seeing the new doctors..I will be praying for you that everything works out for the best for you..
        ((((((((hugs))))))))))
        Hugs
        Ronda

        ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


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

        Diet Reference Sheet:
        http://www.ic-network.com/diet/icndi...tsheet0909.pdf

        Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

        Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

        Meds I have Tried:
        Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
        Lexapro< Bad reaction to this med!
        Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

        Dx With IC in Nov 2006 with Hydro/Cysto
        Hydro/Cysto Caused Bladder to Rupture.

        Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



        ICN 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


        • #5
          ok where are they at, I need someone to vent my frustrations at, who cold be better to aim at then those moron doctors..
          'The will of God will never take you where the Grace of God will not protect you.'

          Comment


          • #6
            When I first went to the uro who diagnosed me, I told him my gyn had told me the pain was in my head. This uro, God bless him, said it sounded more like it was in my bladder. He retired two years ago and I still miss him very much even though I do have a good urologist.

            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

            Comment


            • #7
              Lori,
              I wonder if you could get into a clinic that's doing the CellCept trial, especially since you did have success with the CyA. I think the link Jill put out had 19 centers across the US doing the trial. And since those doctors are actually looking for patients who've failed everything else, you might not have the same trouble with doctors believing you. And if the centers are providing the clinical trial for free (?), it might eliminate the insurance headache as well. Just a thought.
              Wishing you better days soon & much success-
              Kadi

              -------------------------------------------------------------
              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.
              ------------------------------------------------------


              New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
              Source - Pinterest
              "


              Current treatments:
              -IC diet
              -Elavil 50mg at night
              -Continuous use birth control pills (4-5 periods/year)
              -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
              -Pyridium if needed,
              -Pain medicine at bedtime daily, as needed during the day several times per week
              -Antibiotic when doing an instillation to prevent UTI
              -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
              -Dye Free Benadryl 50 mg at bedtime
              -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
              -Managing stress= VERY important!
              -Fur therapy: Hugging the cat!

              Comment


              • #8
                When I was first ill ten years ago the doctors could not find out what was wrong with me - I was in so much pain every day - instead they kept telling me how emotional I was as I was often in tears. They sent me to a clinical psychologist because they thought I was making it up. I have had to learn to try to be as objective as possible whenever I see a doctor and I am now very nervous of them. Today, nearly ten years later I have been diagnosed with ic, and a recent scan last week showed something pressing on my uretha and bladder. So ten years later I have proved I am not a crazy, hysterical female but the notes they made will always be on my record.

                Comment


                • #9
                  HI! I would definently ask for the records before hand, and I would also tell the new dr. what you went thru with the base doctors.
                  My ex husband had shoulder surgery at an Army base hospital (he was still covered under his fathers base health plan at that point) and the surgery was a mess! He's 50 yrs old now and still having problem with that surgery and have had other dr.s go in and redo it several times. SO I'm not a fan of base dr.s
                  I hope you can get better treatment now that you will be out of their care. Keep us posted! Good luck to you! Roxie

                  Double Spinal Cord Stimulator surgery 8/09
                  Unsuccessful MiniArc sling surgery 12/07
                  Dx'd Hypothyroid
                  Dx'd Chronic Axonal Neuropathy & Myopathy
                  June 2007
                  Dx'd IC May 2006 (after suffering for 25+ yrs!)
                  First Cysto 1979
                  First Hydro 1981 (Many treatments since then!)
                  Collagin"Durasphere" injections for urethra
                  Gall bladder surgery Aug. 2004
                  Gastric Bypass Dec. 2004
                  Dx'd: Barrett's Esphogus July 2004
                  Dx'd: Vaginal Atrophy 2005
                  Bladder surgery 2000
                  Dx'd: IBS 2000
                  Hysterectomy (fibroids) 1999
                  Laminectomy 1989
                  Dx'd: Degerative Disk Disorder 1989

                  For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                  I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                  Comment


                  • #10
                    I meant to add Iclori that maybe you could play it by ear and wait till you trust the doctor before you talk about your other doctors. As you can get your notes I think you should request them but in my experience doctors are more likely to take notice of each other than you the patient. Take this opportunity to get a fresh start perhaps and let him lead the way in your new treatment as he might have fresh ideas without being swayed by your history. Good luck as I feel for you.

                    Comment


                    • #11
                      I think ponytail is right on.
                      Kadi

                      -------------------------------------------------------------
                      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.
                      ------------------------------------------------------


                      New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                      Source - Pinterest
                      "


                      Current treatments:
                      -IC diet
                      -Elavil 50mg at night
                      -Continuous use birth control pills (4-5 periods/year)
                      -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                      -Pyridium if needed,
                      -Pain medicine at bedtime daily, as needed during the day several times per week
                      -Antibiotic when doing an instillation to prevent UTI
                      -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                      -Dye Free Benadryl 50 mg at bedtime
                      -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                      -Managing stress= VERY important!
                      -Fur therapy: Hugging the cat!

                      Comment


                      • #12
                        Thanks, everyone. Yeah, I really don't want to talk about how my former urogyn decided I was non-compliant with treatment because the typical IC meds did not work for me. The doctor said he never heard of anyone not responding to those three typical meds. (Basically he said it's impossible not to get better on those three meds - you are crazy if Elmiron, Atarax and Elavil don't fix you....)

                        Just another example of a doctor not trusting what the patient says, and knowing a little but not enough about IC. We hear the same stories over and over again here, on the boards.

                        Blessings,
                        Lori

                        Comment


                        • #13
                          Lori, all my life doctors did not know what was wrong with me. They guess but all was wrong and now it is to late. Doctors don't always have the answers and they are not always right. Just because they feel one way about you don't make it right. I am so glad you are going to another doctor. My God I don't know how you came this far but you did Lori. And I hope this doctor will listen to you and will work with you and find something that can help you with relief.

                          I am hoping this is a start for good things coming your way. I think it is a miracle in itself that the military is allowing you to go to another doctor.

                          Prayers and thoughts are with you,
                          Hugs, Trishann

                          Comment


                          • #14
                            Yup Lori, Thats like my Uro.. He says IC is painful and I should never let the pain get out of control, BUT he wont give me pain meds.. I just dont understand most doctors.. I think though you are heading in the right direction.. And like I said before I pray the new doctors will help you...
                            Hugs
                            Ronda

                            ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


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

                            Diet Reference Sheet:
                            http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                            Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                            Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                            Meds I have Tried:
                            Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                            Lexapro< Bad reaction to this med!
                            Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                            Dx With IC in Nov 2006 with Hydro/Cysto
                            Hydro/Cysto Caused Bladder to Rupture.

                            Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



                            ICN 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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