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IC patients in N.C.

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  • IC patients in N.C.

    Anyone from Raleigh,N.C.?

  • #2
    I AM FROM BURLINGTON, NC.
    jd

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    • #3
      Hi,

      I'm from Chapel Hill, just right down the road from you.

      You are certainly not alone with this disease. It is quite a challenge to manage.

      Take care and keep in touch,

      Melly

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      • #4
        Hi,

        I'm from Chapel Hill, just right down the road from you.

        You are certainly not alone with this disease. It is quite a challenge to manage.

        Take care and keep in touch,

        Melly

        Comment


        • #5
          I was so thrilled to hear from you both! Have either of you found a good urologist? Is there a support group in the area? Hope you both are doing well! <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

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          • #6
            I was so thrilled to hear from you both! Have either of you found a good urologist? Is there a support group in the area? Hope you both are doing well! <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

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            • #7
              I GO TO DOCTOR WOLFF AT BURLINGTON UROLOGICAL. AND HE IS JUST GREAT. HE REALLY EXPLAINS THINGS AND YOU ARE A PARTNER WITH HIM IN YOUR TREATMENT.

              HOPE YOU ARE DOING WELL.
              jd

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              • #8
                JD, glad to see your response. Does Dr.Wolff insist that his patients have the cystoscopy with hydrosistention or the potassium test to diagnose? Will he give oral meds based on patient symptoms? I would appreciate so much any information on how he treats ic. Thank you so very much. <img src="graemlins/hi.gif" border="0" alt="[hi]" />

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                • #9
                  Dr. Wolff offered me the potassium test and I chose to do it and it proved I had IC, (that was on a Friday). On Monday, we did the cysto/hydro for a confirmed diagnoses and so he could start me on elmiron and impremine. Of course he already had me on pain meds. When the elmiron didn't help and I kept getting worse, we did a round of dmso treatments along with taking the elmiron. I also have gotten an interstim implant. Dr. Wolff really talks to you and you are a partner with him in deciding what treatment options might work for you. His staff is also very wonderful, they treat you like a real person and never, never say you are not in pain when you are and never, never treat you like you are crazy. They always call me back when I call them and if Dr. Wolff in not in, they always get me an answer from another doctor. They have been a real blessing to me and have been very supportive.
                  HOPE YOU ARE DOING WELL. <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />
                  jd

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                  • #10
                    Hello to everyone. Im a 21 year old male from South Carolina. Im in a little town near Greenville. As far as I know there are no support groups in South Carolina. There is a support group in Greensboro North Carolina. There is also a great doctor there for Ic. Have any of you heard about the doctor or group? I really want to attend a meeting. However Im not well enough to travel yet.
                    In God I trust.

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                    • #11
                      hi destiny solo ! check your pvt msg's !!!
                      m <img src="graemlins/jester.gif" border="0" alt="[jester]" />

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                      • #12
                        Hi all,

                        Haven't visited the boards in a while. I am on Elmiron and it is really starting to make a difference. I can eat many foods that were certainly on my black list for causing flares. I have been on the Elmiron for about 6 months. And I have also been on Ellavil, amitriptyline (spelling?) for the same length of time. I am going to discuss going off the Elavil in my next doctor's visit. I go to a doctor in Durham, who has been very helpful.(His name is Dr. Robert Andrews). We work together to manage this condition. The more you know the better. The Interstitial Survival Guide (book) has been a great resource. As for the doctor in Greensboro, I visited him too. He's great and can come up with an individualized plan for you. Both he and my local doctor agreed that Elmiron was the way to go for me. When I was first diagnosed, I mainly tried diet modification to control symptoms, but that becomes a daunting tasks, and really constrains your life. It is like having an eating disorder -- it becomes all incompassing. The doctor in Greensboro is Dr. Robert Evans. My insurance doesn't cover him, so I have only had one visit. I may consult with him about possibly switching from the Elavil to hydroxine. The Elavil causes weight gain, and after having limited the diet for so long, I wanted to be able to indulge again without having to worry so much about the weight gain.

                        Sorry to ramble. If any of you need additional info, please don't hesitate to write me at home, [email protected].rr.com.

                        Well wishes as well as holiday wishes to you all,

                        Melly

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