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  • Positive Potassium sensitivity test

    So I had my KCl sensitivity test this am. The urologist only got a1/4 of the solution in and the pain started. I was so uncomfortable I was sweating and my legs were shaking like leaves. She immediately removed the solution and instilled sterile water with lidocaine. She uped my Atarax dose and gave me Ultram for pain. We will try this with Pyridium for now. I see her again in August due to the fact that I am doing traveling nursing and am leaving NH for 3 months. She was so nice. She said I can call anytime and if the meds aren't woring she can always call something into to Baltimore. So it's official I have IC. She said that in the future she still might want to do a cysto but will wait for now. Thanks everyone here for the support.
    I have numerous health problems, including endometriosis, IC, pudendal neuralgia, pelvic floor dysfunction, pelvic dyssnergia.
    My meds:
    Seasonale
    Atarax
    Zanaflex
    Elavil
    Lactalose

  • #2
    Well I hate that it was positive, but at least you know now what is wrong and can treat it..Hope everything works out for 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


    • #3
      I hate to say "Welcome to the club..."

      But, it sounds like you have a doctor who knows what she's doing and is willing to help you out. Now you know what's going on, and with that doc's help, you can be on your way to finding a treatment that works for you
      ****
      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.

      Comment


      • #4
        I too am sorry to hear that you have it, but like the rest now that you know for sure you can move forward - finding out is 90% of the battle I think - now you can begin to feel better! I agree sounds like you have great doctor who is willing to do all she can to help you feel better and as soon as possible!
        Hugs,
        Tracey
        How do you eat an elephant? One bite at a time...

        Harry arrived 2/23/09!



        *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.

        IC Diet Cheat Sheet:
        http://www.ic-network.com/diet/2009icdietlist.pdf



        Dx's:
        IC dx'd Nov 2004
        Lymphocytic Colitis dx'd July 2005
        Possible IBS
        Current IC Meds
        Vistaril 25mg in the evening
        Previous IC Meds taken:
        Cystoprotek - 2 caps 2x's a day
        Elmiron, 100mg 3x's a day
        Ditropan, 5 mg 3x's a day
        Others:
        Wellbutrin 150mg 2x's a day for Anxiety/IBS
        Pepcid 40mg a day for GERD
        Zytrec for Nasal Allergies
        Align Probiotic daily for IBS

        Comment


        • #5
          Originally posted by ktrn79 View Post
          So I had my KCl sensitivity test this am. The urologist only got a1/4 of the solution in and the pain started. I was so uncomfortable I was sweating and my legs were shaking like leaves. .
          So sorry for the positive result. I feel your pain for the PST. Same thing happened to me she barely got much solution instilled and the fire in pelvis stated. My legs started shaking uncontrolably as well. I hope you are feeling some relief now though. Please take care!
          ~Laura

          There can not be a crisis next week. My schedule is already full.

          March 2006 IC tested positive

          current treatments for IC:
          Zoloft 100mg
          Prelief
          tramadol hcl 50mg (4-8 per day)
          diphenhydramine (1 nightly)
          elavil 25mg, Just started Nov 11

          additional meds for pain if needed:
          darvacet
          loratab
          percocet
          tried Elmiron for over year and didn't see much of a change, gained weight

          Also take Lisinolpril for high blood pressure

          Other conditions:
          IBS '93
          depression '94
          stomach ulcers '95
          Mitral Valve Prolaspe Syndrome '01
          Migraines since childhood
          Chronic Fatique '03


          It's not the number of years in your life that matter but rather the life in your years.

          Comment


          • #6
            Sorry the test was so bad for you. I just had the cysto/hydro test. How long do you think you've had IC? My doctor said that he tried the potassium test on a nurse who didn't have IC and she was jumping off the table in pain. So, he doesn't use it. He didn't think it was accurate for diagnosis. I'm not saying I think this nullifies your results or anything. It you have all the symptoms and PAIN it probably is IC. I'm sorry to hear you got diagnosed.
            I would put off the hydro test because for me I think it damaged my bladder more, stretching it to capacity like that. At least, it lets you know where you stand though - how bad your case is, so you have an idea for your own comparison of what the damage is compared to other people's.

            Comment


            • #7
              I'm really not sure how long I've had the IC. Last spring I had terrible periods and pelvic pain and am being treated for endometriosis. In September, I had the first flare where the doctors felt I had a UTI but the culture came back negative. I hae had 5 of these episodes since then. I have always had frequency issues. I thought everyone peed 20+ times a day, to find out that normal is 6 I was shocked. I have a wonderful doctor wants to treatments first before the cysto. I am still pretty sore now. Its wierd but it's the same pain I had when we thought I had endo. Since I didn't have surgery who knows if I do have endo.
              I have numerous health problems, including endometriosis, IC, pudendal neuralgia, pelvic floor dysfunction, pelvic dyssnergia.
              My meds:
              Seasonale
              Atarax
              Zanaflex
              Elavil
              Lactalose

              Comment


              • #8
                YOU KNOW, not that I think I can know exactly what's wrong with you, but I'd wouldn't be surprised if the IC was causing your bad periods. I got a laparoscopy because my OB thought my pain might be endo. I did have a few spots of it which he scraped off, but it didn't help my pain at all. After going in to the same doctor about every week for the pain, he suggested Hormone therapy. He wanted to give me lupron shots which basically put you into an early menopause for the time you are taking them. I heard from my co-worker that she had REALLY bad side effects from that treatment and she was still dealing with them 10 years later.
                Then, I went to a different OB and got referred to my uro. I think that my periods got worse when I got IC and the endo wasn't my problem.
                It's wonderful that your doctor is treating you without doing the cysto. I hope you get relief from your treatments!!!

                Comment


                • #9
                  I am actually on Lupron Depot now. Thats how they decided to treat my endo. I haven't had any side effects with it.
                  I have numerous health problems, including endometriosis, IC, pudendal neuralgia, pelvic floor dysfunction, pelvic dyssnergia.
                  My meds:
                  Seasonale
                  Atarax
                  Zanaflex
                  Elavil
                  Lactalose

                  Comment


                  • #10
                    Well, that's good that you aren't having side effects. My co-worker and her sister who had that treatment both get mild sezures (sp?) when they menstrate. They space out for a minute or so every now and then and have no idea that it happened. It's pretty weird. I've seen it happen to my co-worker. She gets a blank stare and her head rolls back. They think it was linked to the Lupron. Her sister had her license taken away.
                    I don't know how strong a dose they got. I imagine pretty strong. She's had 1 ovary removed and almost had the other taken out too. Her case of endo is pretty severe.
                    I don't want to scare you. If the shots are helping you manage your pain that is wonderful. I don't know if it's even a reaction to the Lupron or not. I just think it's good to be informed. I decided not to get treatment for the endo because my pain is pretty constant. So, I think it's more from the ic.

                    Comment


                    • #11
                      No it doesn't scare me, I've been on it 6 plus months. My apin then was constant. Would double me over. They tried continuous BC first then the Lupron. I actually haven't had that bad of pain since I started the Lupron, plus haven't had a period in along time. I might just be unlucky and have both IC and endo.
                      I have numerous health problems, including endometriosis, IC, pudendal neuralgia, pelvic floor dysfunction, pelvic dyssnergia.
                      My meds:
                      Seasonale
                      Atarax
                      Zanaflex
                      Elavil
                      Lactalose

                      Comment


                      • #12
                        Well I called my gyno today to tell her about the IC and how the PST caused the pain we thought was endo. She agreed to take me off the the Lupron Depot (yippee) and go back on continuous BCP. I am so happy to stop that med.
                        I have numerous health problems, including endometriosis, IC, pudendal neuralgia, pelvic floor dysfunction, pelvic dyssnergia.
                        My meds:
                        Seasonale
                        Atarax
                        Zanaflex
                        Elavil
                        Lactalose

                        Comment


                        • #13
                          Oh, that's great news!! I also did continuous bcp for a while. I got breakthrough bleading so I stopped doing it. If it works for you though I'm very happy to hear it!
                          Woo hoo ... no periods! Or at least not for 3 months right?

                          Comment


                          • #14
                            I actually haven't had my period in almost a year. I was on the continuous BCP before the Lupron. On the Lupron you don't get any periods either. I actually will have to have my period but not until August.
                            I have numerous health problems, including endometriosis, IC, pudendal neuralgia, pelvic floor dysfunction, pelvic dyssnergia.
                            My meds:
                            Seasonale
                            Atarax
                            Zanaflex
                            Elavil
                            Lactalose

                            Comment


                            • #15
                              Potassium Test

                              My doctor is scheduling me for a Potassium Sensitivity test soon. I've researched this a bit online and found that a lot of doctors, etc find this test to be unnecessary. They say false positives can be given and it can cause extreme amounts of pain. After reading everything, I don't think I want to do it. I have two questions if anyone wants to answer them.
                              1. Has anyone had this test and foun it unnecessary, very painful, a good way to diagnose IC?
                              2. Has anyone that has IC found out in another way that this test, and if so, how?

                              I really don't want to do anything that is considered unnecessary. I was first diagnosed with Endo, and now my doctor thinks its IC, except I never have the urgency that most other people do.

                              Thanks in advance for any responses!

                              Comment

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