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Thread: Dr.s for IC

  1. #1
    Registered User
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    Dr.s for IC

    Hi
    I just want like everyone else to make sure that i am getting the best treatment available with the best doctor... I was wondering if anyone out there has heard of a Dr. Stephen Dejter in Washington DC? I have heard of Dr. Robert Moldwin and Dr. Robert Evans but do IC patients really need to go to these Doctors or can alot of Uroligists handle IC since basically the treatments are the same most of the time?

  2. #2
    ICN Member lalarainbow's Avatar
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    Jul 2003
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    Nova Scotia ,Canada
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    604
    Hi,
    My Uro is great and up to date on the latest for IC. My family Dr is the one who suggested I might have it in the first place.... so I am blessed to have good care right here.. We can't all be going to Washington, Mind you if someone gave me the money I would!
    Take Care
    ~~Pam~~
    God brought me to it, He will bring me through it!!!

    Diagnosed 2003
    by cysto/hydro
    Elmiron took almost a year- made me sick, caused diarrhea
    Pyridium -Made me sick
    Detrol and Ditropan- caused constipation
    Trying DMSO instill- had 5 out of 6
    Started Oxytrol Patch- no side affects so far --Jan 2011
    stopped using them after 3 months-- skin was getting irritated
    Cysto/hydro April 6ht 2011-- on expansion only hold one cup
    IBS/ IC
    High blood pressure meds and Crestor
    Sinequan

  3. #3
    Forum Manager ICNDonna's Avatar
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    Oregon
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    There are many, many urologists who are skilled at treating IC. I know I have one and I live in Oregon. My best suggestion is to educate yourself by such things as reading the information in the Patient Handbook, Dr. Moldwin's book, etc. --- then you will know about available treatments and can discuss them with your doctor.

    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Diet list: http://www.ic-network.com/diet/2009icdietlist.pdf

    You'll find my story at: http://www.ic-network.com/patientstories/donna.html

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Anyone who says something is foolproof hasn't met a determined fool
    .....My Meggie.....

  4. #4
    Support Leader Sarojini's Avatar
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    The others are right... many urologists know about IC and can be very good, especially if you have a good relationship with him/her and feel you have a say in your treatment plan. You don't need to fly to see a world famous one, necessarily!! Information is definitely power, so read all you can about your condition and discuss things with your doc.
    ****
    Jen

    *Diagnosed with severe IC in 2004
    *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
    *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
    *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

    **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

  5. #5
    ICN Member Romans8:28's Avatar
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    I have a great urologist in a small town. He may not always know everything that's out there but is very open to me bringing in suggestions and research. The others are right information is powerful. I often take in research, articles etc. and ask questions. I'm so thankful for the personal care and the freedom to have imput in my treatment that my local urologist can give! Though I'd love to have the oportunity to sit down and ask specific questions to some of the "IC Guru's" as my DR. calls them, I wouldn't trade my Dr!!
    Good luck hope you find a great DR.

  6. #6
    ICN Member Dixiefireball's Avatar
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    Jan 2003
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    South Carolina USA
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    I see dr.kerfoot I love him to dealth but it took a lot of time for me to trust him because i was scared he is a I.C doctor.
    he studied with Robert Evens, but in either case I feel if you trust your uro that is all that counts.
    sending you hugs and prayers
    Rhonda
    Medicine taken daily or as needed:
    1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
    2. MS.Cotin 100mg 3x daily
    3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
    4. Fentanyl 100 mg Change every 48hrs.
    5. Gentamicin 80mg install after each rescue treatment
    5 Leviquin 500mg self start as needed.
    6. Klonopin 1 or 2 daily as needed.
    7. Prosed/DS as 1 every 6hrs as needed.





    I have IC, but IC doesn't have me anymore!

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