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  1. #1
    ICN Member Akburns's Avatar
    Join Date
    Jun 2016
    Location
    Mansfield,Texas
    Posts
    21

    Thumbs down REMISSION OVER! I am SOOOOOOOO MISERABLE

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    It's been awhile since I posted here. I think it was late July. I had a lingering flare after a kidney infection. No infection this time around. That flare ended by mid August. Ever since Christmas my IC symptoms have gradually been increasing in intensity. While I was still dealing with that flare on Aug 1 of last I was in horrible car accident. I was T-Boned by a drunk driver who ran red light in broad daylight and I suffered a broken/dislocated left ankle and compound fracture of the tibia and a fractured fibula. Three surgery's with several casts and lots of hardware still in place I am still using crutches and wearing a boot on my left leg that I'm not sure if I will ever be rid of. Of course this issue only part of my overall health situation since I also deal MS and Rheumatoid Arthritis. And now I am dealing with IC again! MS has left me with a bladder I can't control to begin with, which I have discussed in previous This latest IC flare probably started with getting off the IC diet around the holidays. Last week I tested negative for a uti. My MS and IC symptoms overlap when it comes to my bladder so the main difference that tells me it's IC is the burning. And OMG the burning just about has me going off my rocker. I've been thinking about instillations but I'm sure if that will work for me due to MS related leaking. During my remission I stopped taking Elmiron and and found out today my insurance won't cover it. I need lots of prayers and support while I deal with all this adversity. Thanks for reading this gory and complicated post.
    Ashliegh

    Diagnosed with IC and Hunner's Lesions June 1 2016
    I also suffer form MS, VV and Rheumatoid Arthritis

    I am married with 3 children: a son and two twin daughters.

    IC Symptoms: Burning inside the bladder that gets worse as the bladder fills and is almost unbearable during urination.

    MS Symptoms: Urinary Incontinence, Muscle Spasms, Numbness and tingling in my legs, balance and gait issues.

    Rheumatoid Arthritis Symptoms: Severe Joint pain and swelling in my knees and ankles.

  2. #2
    ICN Member
    Join Date
    Oct 2017
    Posts
    34

    Re: REMISSION OVER! I am SOOOOOOOO MISERABLE

    Don't give up. It is very tough for me too. Just keep trying your best. That is all we can do.

  3. #3
    ICN Staff ICNDonna's Avatar
    Join Date
    Mar 2000
    Location
    Oregon
    Posts
    41,965

    Re: REMISSION OVER! I am SOOOOOOOO MISERABLE

    I have seen reports from others who have experienced remission and stopped medications --- then had symptoms return. I'm so sorry you are having a similar experience. One thing I suggest is that you talk to your doctor about requesting an exception to cover elmiron for you --- if it was elmiron that helped you go into remission, it could be an answer for you again.

    Have you looked at the AUA Guidelines (see link in my signature below)? There may be some options there that help you. And when you feel better, please do stick with the things that help get you there.

    Sending healing wishes,
    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    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.
    [IMG]

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

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