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Let's create a list of IC specialists in Canada?

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  • #46
    It seems to be the same site as this, where could I find the list?


    • #47
      Sorry this took me so long to reply to this, I haven't been on the computer much lately.

      Go to the IC ass web site given in a previous post and there is a contact us on it some where I email a person who very nicely responded to all my ?'s and sent me a list of all the Dr. that have register with them that they treat IC, there are I am sure other's who treat it but have not registared with them, so it does not have all dr for sure but it is a starting place.

      This person forgotten her name right now is very helpful with any info you need, I have even emailed her after speaking to uros and getting conflicting info, and she has given me the latest thoughts. I think sometime Dr. learn about it but then as ideas change they don't keep up with the new thinking, so they don't always know what is current. I realize they have lots to keep up with, so if IC is just part of their practice, they may not be current.
      My are with you all. May you all find a way to peace and joy in your lives.


      • #48
        IC support, in person, downtown Vancouver, 2011

        I'm willing to be a connector/coordinator to get a Vancouver support group going. I contacted two Lower Mainland names mentioned in this forum, they are located in a city outside of Vancouver but don't currently meet as an in-person support group.
        I'm interested in meeting centrally, even somewhere nearabouts St. Paul's Hospital. We will need to brainstorm meeting space, and I'm willing to start putting out feelers about that if there is enough interest.
        If you are interested in meeting with other IC patient to discuss places to get/try treatment, solutions/remedies we've tried/had any successes with, local GPs sympathetic/knowledgeable about IC (I have an idea about this one), specialists, current local research trials, and to share experiences/successes/side effect of different narcotics/opiates, let me know. I'm interested in informal gatherings initially, and am keen to begin this in downtown Vancouver somewhere as soon as March 2011.
        Please connect if you are interested.
        Vancouver BC Canada
        Severe IC developed fairly quickly, autumn 2010.
        So severe that I was bed-bound & on 160mg/day morphine to cope with torturous pain levels, and unable to function other than hospital/medical appointments, for seven months. Then, miracle of miracles, something started working. I am steadily lowering the methadone dose level. I have been far out of that desperate nightmare hell zone for several months now and continue to improve.

        - Ranitidine (anti-histamine, H2-inhibitor) 300mg/day
        - Methadone 9 ml/day
        - Instillations:
        - 40ml Kenalog (steroid for inflammation) 2 x per
        week, along with rescue cocktail of heparin,
        lidocaine, sodium bicarbonate
        - 20ml Uracyst, monthly @ $100/per
        - Depo lupron injections for endometriosis, monthly @ $88/per