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New Dx: Neuropathy Myopathy

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  • #1

    New Dx: Neuropathy Myopathy

    Well I got the results back from the nerve/muscle/tissue biopsy today and it wasn't good news but at least it puts a name to the problem I've been having with the terrible achiness...it's Neuropathy Myopathy. Does anyone with IC also have this problem? I'm suppose to continue taking Lyrica (which is causing weight gain ) and I may have to start having I.I.G. IV's once a week to help improve my strength. I was hoping to get this problem figured out.......but wasn't planning on such a serious diagnosis! Now I have another issue to deal with......ugh!!!!!!!!! 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 pain.....it's amazing stuff!!:woohoo:
    Tags: None
  • #2
    Roxie,
    I'm so sorry that you have something else that is so serious. I don't know anything about it and don't have it. I'm just happy that you finally got it figured out and I hope you start to feel better soon.
    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
      HI Christine!
      Thank you! I'm happy that the dr. finally has something to work with......but it's a tough diagnosis....... I'm been online since I got home trying to see other options to deal with this.....
      My Rheumatologist has his own theory about it......he thinks that you get this problem AFTER you've had a virus....and this verve issue is what you get afterwards. Sounds a lot like IC huh?? 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 pain.....it's amazing stuff!!:woohoo:

      Comment

      • #4
        I'm sorry you got yet another diagnosis! Did he say if there was anything that would help besides the treatments he told you about? I really hope you feel better soon!

        Hugs, Sandy
        *IC-- Summer 2004; PFD--October 2005
        *Fibro--Fall 2000; CFS-- Fall 2000
        *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

        Total Abdominal Hysterectomy--adenomyosis--9\08

        04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

        Comment

        • #5
          Hi Roxie.
          I am sorry you are going through all this. I am seeing my rheumy in August, I hate that I have to wait so long. I have a suspected autoimmune disorder but they are not sure what. I have a positive ANA, sed rate, C-reactive protein. I have BAD wide spread muscle aches and pains. I get really bad muscle pain in my back( upper and lower) and also in my legs. If I walk any distance, my legs are sore and tired. I am only 32 years old and I am in worse shape than my 62 year old dad. I hope my rheumy will have some answers for me. I am sorry you are dealing with this Roxie, like having IC is not enough. I bet they are even connected somehow. Hope you get some relief soon.
          Jen

          Comment

          • #6
            Ugh Roxie! It sounds like IC because they don't really know where it comes from or why you have it. Why does it seem like everything we get is like that?!?!
            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

            • #7
              Sandy,
              As of right now it looks like my options are pretty limited as to medications etc... I was reading about the IV of Gamaglobulin (sp?) and it's a combination of 40+ peoples blood. It's screened for virus's and such but there's no guarantee that you won't still get a virus from the blood! With my system being so low from everything else I have I hate to take a chance of getting some dreadful virus or disease! Life is sure rough some times! 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 pain.....it's amazing stuff!!:woohoo:

              Comment

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