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Have IC and In West Virginia

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  • #16
    Ic

    I've only run into one person around my area that has IC. I think most people don't mention it because so many have not heard of IC and they look at you like you're crazy.
    Pam

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    • #17
      I agree Pam, not to many mention it becasue they have to explain it and it just isn't always worth the explaining to people.

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      • #18
        Hi. I am from WV. I was doing the WV IC Support Group until I got really, really sick. Then somebody else decided they were going to do it but I have not heard from her in over a year. Dr. Zaslau at WVU was helping me. I can talk to him again and see if we can't get something started again. I know I would love to start our group back up.

        By the way I think my info on the support group page is wrong. My email address is [email protected] and my phone number is 304-292-9725. Feel free to contact me anytime.
        Louise
        West Virginia Interstitial Cystitis/Prostatitis Support Group Leader
        [email protected]

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        • #19
          Pam I'm so use to that look that yes I think people just don't know what to say. I just met my first person in the doctors (Zaslou) office in Jan, we exchanged names and phone #'s, but the only reason we started talking was I heard her say she was here for a check-up on her ic.

          Rad, I think anytime us icer's can get together would be great. Did you all have a lot of people turn out for the meetings? Sorry to here that you have been ill. I was wondering if there was a group in the Charleston area since some of us on here are closer to that area?

          Marshmel

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          • #20
            We usually had around 5-10 people at each meeting. I always had meetings at WVU Hospital in Morgantown. I do not know of a group in Charleston, but would be willing to try to find a place halfway for us to meet if there is enough interest. Like I said above, I don't know what happened to the person who took it upon herself to have the support group meetings while I was sick. So I would be glad to get something started again.
            Louise
            West Virginia Interstitial Cystitis/Prostatitis Support Group Leader
            [email protected]

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            • #21
              hi to WV Gals!

              My name is Valerie and I live in South Charleston, WV. I finally decided to get on this site and check out postings from our area. It's nice to realize you all are out there but I certainly wish you didn't have IC.
              I have IC and go to Cleveland Clinic to see a urologist there. I had a hard time getting in to see and then getting a diagnosis from urologists here in Charleston. I was diagnosed in 2001 and have the Interstim implant, which helps.
              I had heard about a support group in Morgantown and wanted to attend. I have some problems with traveling so it just wasen't realistic. It would be so wonderful to get an informal group together somewhere convenient for those of us who wish to exchange information.
              just wanted to introduce myself and send my thoughts and concerns to those of you who are having a hard day! Hope to hear from you!

              Val

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              • #22
                Hi Valerie, welcome the ICN. Glad you found us locally.

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                • #23
                  IC in WV

                  Hi Valerie
                  Welcome to the boards. I work in Charleston, WV and Dr. Mali has helped me a lot.
                  Pam

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                  • #24
                    Hi Louise

                    It has been a long time since I have heard from you. How are you doing? I am going to Morgantown tommorrow to see my pain thearpest. I would come to your support meetings.

                    Deborah Bush
                    I have IC, the IBS, Heartburn, High bloodpressure,thyrod problems, depression and clorties pain.

                    Comment


                    • #25
                      Hi Valerie. to the ICN. Sorry I didn't answer your post earlier but our church is having revival this week and I stayed with my sister so that I didn't have to travel so far. I came home today to take care of some things and saw your post.

                      I need to talk to Dr. Zaslau and see what is going on with him and them I will plan a support group meeting as soon as I can. I will have to see where we could have it. I am not sure where we could meet that would be more central. I can assure you though that all the meetings I have had have been informal. I pass along any new info that I have and then we chat about how we each cope or whatever comes up.

                      Again, I will see what I can do. If anybody has ideas please let me know.

                      Deborah: Sorry I didn't see your post until today either.
                      Louise
                      West Virginia Interstitial Cystitis/Prostatitis Support Group Leader
                      [email protected]

                      Comment


                      • #26
                        Hi Louise The girl that was doing the support gourp has lime diease and is have alot problems with it. Sorry about the misspell words.

                        Deborah Bush
                        I have IC, the IBS, Heartburn, High bloodpressure,thyrod problems, depression and clorties pain.

                        Comment


                        • #27
                          Hi Valerie, I'm sorry I didn't see your post earlier but welcome I live about an hour above Parkersburg on the Ohio River. I'm glad you found the ICN and some of us locally. Feel free to PM me anytime.

                          Marshmel

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                          • #28
                            Hi All ICers in WV,

                            As I said I am in Parkersburg and I am very willing to have a support group here or in a more local location then Morgantown. My e-mail is [email protected]. Contact me.

                            Teresa
                            Teresa Swisher

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                            • #29
                              Morgantown WV

                              I live in Morgantown. I am actually looking for a pain management clinic also. I currently see Dr. Zaslau at WVU.
                              With Lots of Love and Wishes for Pain Free Days~Heather

                              ~I was diagnosed with Interstitial Cystitis at the age of 23, 4 months after getting married. I also have severe Endometriosis, Adhesion Disease and Pelvic Floor Dysfunction. All of which were diagnosed AFTER being diagnosed with IC. Before IC my only health issues were a history of migraines since I was a child and a battle with cervical dysplasia. I had a LEEP in 2007 and have been clear of the cancerous cells since.~

                              ~Please feel free to PM me if you have any questions, concerns or comments. Or if you just need a friend, someone to listen. I am almost always lurking around online somewhere. LOL~

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                              • #30
                                Hi! I go to pain doctor hear in Weirton, WV.

                                Deborah Bush
                                I have IC, the IBS, Heartburn, High bloodpressure,thyrod problems, depression and clorties pain.

                                Comment

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