Michigan

[ChrissyH Registered User Find all posts View Profile Close ChrissyH]

I was just wondering if there are any Michiganders here. I live in Mount Pleasant. I'm a full time student at CMU and I also work there part-time. I am now 24, but was diagnosed with IC at 19. I was intially put on Elmiron, but once I started to feel better, I was told to stop taking it. I was in a wonderful remission for the last couple years where I mistakenly thought that maybe I was cured, but this past October it came back with a vengence. I wonder if I had continued taking the Elmiron if it would have flared like this. I am originally from California, so I am now seeing a new uro and I'm not sure how I feel about him yet. I'm back on Elmiron now and just had a hydro and cysto on Dec 31st. I don't see my uro again until Jan 27th.

I would love to hear from anyone around here.

Chrissy hi

[Cynthia Ann Junior Member Find all posts View Profile Close Cynthia Ann]

Hi there,
From what my very good doctor has said about Elmiron, he has had patients on it for many years and says even though you think you feel good enough to stop it, most likely you will notice a difference if you do. I plan to stay on it if it works for me. I have only been on it for a little over a month now. I am still waiting for its benefits.
Good luck to you.

[Megs Registered User Find all posts View Profile Close Megs]

hi chrissi,
i am also a student at CMU. i'm 24 as well, but have only had ic for a year and a half. i see a dr. in ohio now, but am looking to switch to one in MI possibly. my dad has researched alot and there is an IC specialist in Royal Oaks named Diokno. maybe you want to give him a call, but i'm not sure how far you want to travel. i can give you his number if you want it. have you found anythign that relieves your flair ups? i've been in severe pain since my DMSO treatment 2 weeks ago and nothing relieves it. i've learned to take a hot pack to class which helps a little bit, but that only goes so far. i hope school is going well for you.
meg

[Amanda Registered User Find all posts View Profile Close Amanda]

Their is another doctor out of William Beaumont Hospital, Dr. Kenneth Peters. He was trained by Dr. Diokno, and many people prefer him to Dr. Diokno.

Just so you know.

Amanda

[Amanda Registered User Find all posts View Profile Close Amanda]

I forgot to add--- I am 20 and in Michigan. Maybe we could have a get-together one time everyone feels well.

Amanda

[theclownster ICN Member Find all posts View Profile Close theclownster]

Hi there! I'm from Michigan too. I've been to one urologist - but I haven't been to fond of her, so I've got an appointment next month with someone new. I too have been looking for someone who would be good. I've gotten a couple recommendations for this urologist - I'm not sure how well he is in IC - but he works with someone who specializes in it (his office is too far for me to get to)so I'm hoping he will be good. He specializes in female urology - so that's a start. I called yesterday and they can't get me in until the end of March. I hope that is a good sign - one that means he's good.

It's nice to know that other people in Michigan struggle like me. Thanks for posting.
Take care!
Jennifer

[Megs Registered User Find all posts View Profile Close Megs]

Thanks for the tip about Dr. peters amanda. do you happen to know why people prefer him to diokno?

[ChrissyH Registered User Find all posts View Profile Close ChrissyH]

How wonderful to hear from other people will live in Michigan!!! I am currently seeing a doctor with Tri City Urology so seems alright. I have an appointment in mid April with a vulvar pain clinic in Ann Arbor at U of M because I also have vulvar vestibulitis. I am hoping that since they are specialists they can help me better.

Classes are going well so far. I'm glad to hear that I'm not the only one at CMU who's suffering with this. It's hard to explain to other people, and I don't talk about it with anyone except my husband and some family members. Maybe we can get together some time.

I'm excited because tomorrow is my four year anniversary with my husband. He has been very supportive during all of this and I don't know what I would do without him.

I hope that everyone is surviving this horrible winter weather.

Chrissy

[Megs Registered User Find all posts View Profile Close Megs]

Hi Chrissy,
I hope you have a good day with your husband tomorrow, and I'm glad you have someone close to support you. My fiance moved up here in the fall, so it has helped alot to have him here. We are getting married in sept, and i'm a little afraid of how my insurance coverage will be, but hopefully it will all work out. You will have to let me know how your appt. in Ann Arbor goes. I too have vestibulitis, and was going to head down there, but my dr. in akron thinks it will get under control when the IC does, so I held off. I hope they find something that works for you. For now, i am seeing Dr. Sundstrom (she's a gyno) in Midland, who is treating me for it, and i would recommend her if you need anything. she is wonderful and has problems of her own, so she is very understanding and good. she also referred me to a PT (who is also very very good) and i was able to get the pelvic floor dysfunction under control and was able to get my insurance co. to purchase a TENS unit for me, which has been nice to have. Carolee (the PT) taught my fiance the techniques she used, so now he does it regularly so i don't have to make so many trip to midland. Are you seeing a uro with tri city? i saw Dr. Kershen for almost a year, and had very bad experiences with him, so i hope you have someone different who is more knowledgable and will treat you for IC. it would be nice to get together sometime and talk to someone who really understands.

i hope everyone has a good weekend and stay warm!

meg

[Shannonmarie018 IC Friend Find all posts View Profile Close Shannonmarie018]

I live in Plymouth MI and I see Dr. Peters in Royal Oak. He's one of the top 10 IC specialists in the US and is soooo nice and way better than all the other jerks that I've dealt with. If anyone wants to send me a private message I'll give you his office number and info.

[tigger_gal ICN Member Find all posts View Profile Close tigger_gal]

Shannon I am glad you like "GOD" so happy that you did go and seee him and found him as pleasent and knowledgable as I told you. next time you are coming down/up/over lol let me kniow.