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  • Dancemom

    everyone will you please please please say some extra prayers for
    leslie and her family. She could really really use them right now.

    You know I am here 24/7 for you.. ((((((((((((((((((hugs))))))))))))))))))))
    'The will of God will never take you where the Grace of God will not protect you.'

  • #2
    Hope everything is okay Leslie
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

    Comment


    • #3
      Thanks!!! Here is why:

      We noticed this weekend that Logans neck was swollen and she was favoring one side. She got off the bus today and said her throat hurt and had her head tilted alittle. I took her straight to the Dr and her thyroid on the right side is enlarged but there are no symptoms of thyroid disease. He is really concerned about possible thyroid cancer and sent us for tons of lab work that I should have some answers in the morning. I jsut don't need this, she has come so far in life for this to be going on. Keep her in your prayers girls with all her other health issues this is just not an option for me to digest right now. Her left side had a massive swollen thyroid that didn't feel right to the Dr. I will let you know what happens

      Comment


      • #4
        Oh no Leslie! I will keep her in my thoughts and prayers. I hope everything turns out oaky.
        Christine



        I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
        1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
        2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
        I have tried every oral medication as well as rescue instills and DMSO.

        I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

        Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
        Also proud mom to the best Bullmastiff on earth, Claus

        Comment


        • #5
          anytime... I didn't say why because I didn't know if you wanted it posted..
          sending huge hugs and prayers.
          love ya
          Cindy
          'The will of God will never take you where the Grace of God will not protect you.'

          Comment


          • #6
            Leslie:

            I will say prayers for you, your daughter, and her doctor. I will pray especially for the doctor that he can cure whatever ailment your daughter is facing. Please keep us posted.

            Erika
            IC diagnosed officially via cysto/urodynamics 1/26/07

            Grade II Endometriosis diagnosed via lap 12/11/07

            "Fall down seven times, Stand up eight."

            "Life is a tragedy for those who feel and a comedy for those who think."

            Current Treatments:
            Interstim Since 5/25/07!
            Birth Control

            Comment


            • #7


              I know how much you must be terrified; it's just awful having to wait, even a few hours, to know what's going on with one of our babies.

              Sending gentle 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

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              • #8
                You're in my thoughts! Hope everything comes out okay.
                Leah

                Comment


                • #9
                  I am so sorry... My heart breaks to hear this.. I just pray that is just something like the mumps ...I will say a special prayer for her and the family..

                  God bless you and your family why yall are going through this, and I hope the Lord will have mercy on you and give you the strength that you will need to get through all this
                  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


                  • #10
                    You are in my prayers. I hope it is something benign that has a quick cure and no side effects. I hate to see kids suffer.
                    Maggie

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                    • #11
                      I will be praying for your family.
                      Hugs sandra
                      "Never Give Up."

                      To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/[email protected]/

                      My Photobucket Link:
                      http://s237.photobucket.com/albums/f...ramack_photos/

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                      • #12
                        Girls thanks so much, Leslie is really upset, I can't possibly imagine the pain and terror she feels.. Please keep the prayers comming.
                        'The will of God will never take you where the Grace of God will not protect you.'

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                        • #13
                          Sending lots of prayers for your family
                          Miss Bessie

                          Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

                          Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

                          Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

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                          • #14
                            Thinking and praying for you.

                            Sending hugs. Trishann

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                            • #15
                              Thinking and praying for you.

                              Sending hugs, Trishann

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