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Have IC and In West Virginia

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  • Have IC and In West Virginia


    Hi...anyone from WV who has IC? I would love to make some local connections! I am in Parkersburg, West Virginia.
    Teresa Swisher

  • #2
    I am also in WV, in Elkins.

    Comment


    • #3
      IC In WV

      I live in Peytona, WV, work in Charleston, WV.
      Pam

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      • #4
        I am sooo glad to have some fellow ICers here. Not that I am glad that anyone has IC, but I feel so alone and being alone and in pain is HORRIBLE!!! My uro is in Charleston. I go to Dr. Cyrus Mali. Do you know him Sunshine? I would love to connect with you guys and kind of start a state support group network if anyone is interested. What do you think?
        Teresa Swisher

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        • #5
          IC in WV

          Yes, I go to Dr. Mali. I've been going to him for years. How long have you been going to him? I hope he has helped you. He is pretty good letting me try different pain medications when I ask him.
          Pam

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          • #6
            My Uro is at WVU. I see Dr Stanley Zaslau. THere is a support group there and it is listed here on the ICN but I haven't heard much out of them lately.

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            • #7
              Dr. Mali is great! I saw him first in 2000 and after the first time I saw him he did a RMSO and I had a wonderfulreaction. So I hadn't been to him in several years. In that time I have had 2 children and a really bad car accident. When I started into this flare I asked my gp to refer me to a local uro and the guy I went to was not a very good IC doctor so after seeing him once I requested Dr. Mali again and I make the trip. I saw him and he immediatley did the cysto/hydro/RMSO. But I have been in so much pain since then. I went to see him after I had that all done on March 28th because of the pain level and he did give me pain meds but the pain is just not getting better. Tomorrow I am seeing my gp and I am going to ask for a referal to a pain management dr. Something has got to give!

              I did see that there was/is a support group in Morgantown and I have tried to e-mail them but the e-mail came back as undeliverable so I thought if there was a need/desire maybe we could all hook up and create at least a phone/e-mail support group throuout the state. Here's to hoping!!!

              My e-mail is [email protected].
              Teresa Swisher

              Comment


              • #8
                I live in Steubenville, OH accross the Ohio River from Weiron, WV. I was from Elkins, wv.

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

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                • #9
                  Hi Deborah!!!!
                  Teresa Swisher

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                  • #10
                    also have IC in WV

                    Hi. I tried responding to a message you wrote yesterday, but I had never posted before and am unsure if I did it correctly. I have IC, and I live in Charleston, WV. I noticed your name and wondered if the gsc was for Glenville State College? I went to GSC. Please write back.

                    Andrea

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                    • #11
                      IC in WV

                      Dr. Mali is great. He usually stretches my urethrea once a year and does the rimso and I always feel better. I try to watch my diet. Yellow #4 yellow dye really puts my bladder in lots of pain. I try to stay away from all preservatives but it's hard to do sometimes.
                      Pam

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                      • #12
                        Hi Andrea, I think we are actually from the same area of WV. I am interested in your remission and how you got to this point. My email is listed in my signature.

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                        • #13
                          HI fellow WVer's I haven't been on the IC site for a few days. I had my first pain clinic apt the other day. Andrea, I did go to GSC. Do I know you????? The pain clinic went well. The first day was iffy but the second day I felt better. Today has been kind of rough, but you know many of us when we feel better we start doing things too fast and I think that is what I tried to do. I lost my job on Tuesday so I am not working at the moment. I would love to be in remission!!! Working on it very hard!!! That is for sure!
                          Teresa Swisher

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                          • #14
                            Andrea, thanks for the email, I replied back but forgot to tell you my complete patient story is also in my signature

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                            • #15
                              West Virginia ICer's

                              Hi everyone, sorry I didn't reply sooner but my computer has been down for 3 long weeks Wow I myself have posted to find other icer's in WV it's great to know there are others out there. For a longtime I thought me and Dancemom were the only icer's in the whole state of WV. It's great to know that there are more of us around and has made my night:woohoo: :woohoo: :woohoo:

                              Vocal, you mentioned pain clinic and I have been hunting for one that would be closer than Morgantown and you are closer to me than anyone, would you mind dropping me a line on the name of the clinic?

                              Marshmel

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