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  • Hi.. im new here..

    UGHH !!!

    ok sorry...I just had this huge long message typed out and my 1yr. old came over and hit Esc and its all gone...ughh...lets try this again...my name is chloe and i am 25 and am married and as you seen above have a 1yr. old daughter named alexis..I have IC,IBS,and Endo..I am soo happy to find this site...I have been sick since i was 16 and finally found out what was wrong w/ me a couple years ago by a student dr., I have an interstim in place..have for a couple years...it helps w/ the urgency but def. not the pain...i have shocks in my left leg(my stim is on the right side) and have since they put it in but the specialist that put it in said it was normal i also have been having the toes on my left foot curling up now...I have tried many of the oral kinds of meidicne's and none have worked for me i am on loratab 5mg. one every 8 hours...I have had such a hard time getting pain medicine's ...I am nervous about it bc I feel like they look at me like I am a druggie...thank goodness for the general practioner that I am seeing now..she is wonderful ...she is trying everything she can do to help me...every spent her vaca reasearching IC...I really like her!! I have had the laproscopy and the cycsto..distension..ughh it is horrible that I cant remember all the stuff I have been through??? I Have been through sooo much w/ all thisand right now am just kind of at a stand still...like everyone says their is nothing that they can do...so I am on ditropan...elavil...loratab...i think thats it...i read somewhere where someone said the ditropan made them not be able to pee..i couldnt believe it...i thought it was all in my head...it does that to me....so i havent been taking it...OKay well thanks for having me i have to run bc my daughter is now sitting in a pile of diapers as she has pulled them all out of her diaper holder...ughh lol!!!




    Judge me and I'll prove you wrong!!


    http://www.babiesonline.com/babies/a/alexisriley

  • #2
    I think you need to get in touch with Medtronic as far as the toes curling and leg problems, it may be just as simple as a reprogramming to help with it or it could be complications of some sort. I would sure contact them and your Dr and demand thi sbe checked into. I also have a stim and have never had anything like that and was told if I do to get in touch with them ASAP.

    Comment


    • #3


      Hello! You are at a geat spot! I'm very sorry that you have IC, and you are suffering so much Check out the patient handbook, ther are lots of tips on self help and diet which is key. Try to hang in there, we are all here for your support.

      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


      • #4
        BTW I have also been suffering since 16, I am now 22.
        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


        • #5
          thanks girls!!!! how does the reprogramming work...i have learned sooo many things already like i had NO idea that you couldnt have an MRI ...no idea.....and i didnt know anything about that they could reprogram them...




          Judge me and I'll prove you wrong!!


          http://www.babiesonline.com/babies/a/alexisriley

          Comment


          • #6
            I they put a control type of device over the stim on your buttock and it sends a signal through the skin and they can adjust how strong the pulse is and what areas it affects. THis is done in the doctors office and is painless. (I hear)
            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
              glad you found us....:woohoo:
              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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