Have IC and In West Virginia

[vocalsgsc]

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

[dancemomof2]

I am also in WV, in Elkins.

[sunshine_77us]

IC In WV

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

[vocalsgsc]

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?

[sunshine_77us]

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.

[dancemomof2]

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.

[vocalsgsc]

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].

[deborah bush]

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

Deborah Bush

[vocalsgsc]

Hi Deborah!!!!

[Andrea Flohr]

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

[sunshine_77us]

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.

[dancemomof2]

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.

[vocalsgsc]

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!

[dancemomof2]

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

[marshmel]

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