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  • Let me introduce myself

    My name is Sharon [posting as 'ambiguous']
    I am 47/married/3 daughters [2 grown/16 yr old at home]
    A Jack Russell terrier named Andy and 2 ferrets named Rocky and Sammy
    I am also a cancer survivor [stage 3 skin cancer since 2004]
    and I have Type 2 diabetes [since 2005]

    We live in Wilmington NC [on the coast]
    transplants from Cape Cod since 2003

    I am in the process of being dx'd at this time.
    I saw my Nurse Practitioner this morning after a week of severe abdominal pain
    after ruling out UTI and vaginal infection and going over my symptoms and history we both came to the conclusion it is probably IC
    So I have an appointment with a GYN specialist on April 18th to have further testing done hopefully to confirm the diagnosis or rule it out 100%
    [cystoscopy with hydrodistention under general anesthesia]
    The test sounds very uncomfortable.

    I do have a few questions;
    I am also in the process of being dx'd with multiple sclerosis
    right now I am considered PROBABLE relapsing-remitting

    Is there a link between MS and IC?
    Are there IC patients here who also have MS?
    Or are the two not at all related?

    Thanks ahead of time to anyone who takes a minute to answer my questions, I appreciate it.
    ~ambiguous [Sharon]

  • #2
    HI Sharon,
    Welcome to the site. There's lots of great info here and great people too.
    I don't have MS but a friend of mine does and I know how awful it can be.
    I hope you don't have IC but does sound like maybe you do. I do know how good it feels to at least have a diagnosis one way or the other! I wish you luck on the test. Take care....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's amazing stuff!!:woohoo:


    • #3
      I want to you to the boards! You're wondering if there are other people on the board with MS. I don't know about MS, but many of us have other autoimmune conditions such as hypothyroidism and lupus. I believe my IC is autoimmune, since I have other problems of that nature and there really isn't anything else, such as trauma or chronic UTI's, that would have caused it for me. It sounds like you're heading in the right direction and that your doctors have a clue, which isn't always the case!


      • #4
        So far, there is no scientifically proven link between IC and MS. However, there are some theories out there that IC may be part of a more global autoimmune process -- and of course, there are theories that it isn't autoimmune at all. You will find that everyone has their own opinion on that one, but the truth is, no one knows what causes IC at this time.

        to the boards I am also originally from Massachusetts (spent summers on the Cape growing up) and am now living in Winston-Salem, NC. Wish I was closer to the beach like you

        *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.


        • #5
          Glad you found us.....

          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:

          Diet Reference Sheet:

          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.


          • #6
            from one Jack Russell Terrier owner to another!