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Hematologist Referral - suggestions on how to talk with the doc about IC

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  • Hematologist Referral - suggestions on how to talk with the doc about IC

    I am being referred to a Hematologist for elevated WBC (multiple months of tests).

    I am always nervous about going to see new doctors and whether or not they will consider IC when providing testing and treatment options.

    Suggestions on how to broach this subject and or how to evaluate the provider upon our first visit.

    thanks,
    Julia
    Last edited by emeraldjules; 05-22-2020, 07:10 AM.
    ~Julia (48, F)

    Diagnosed with arthritis (2009), IC (2010 - symptoms since November 2007), & pre-diabetic (2017), TMJ/TMD (2019)

    Diet Modifications: IC diet
    Currently exploring how to align diabetic nutrition and IC diet (08/2017)

  • #2
    The best advice I can think of is to ask if he/she is familiar with interstitial cystitis/painful bladder syndrome (I suggest using the entire name, not just IC). When procedures or medications are suggested, you can ask if they have an effect on the urinary tract system. You will probably be able to evaluate the doctor by the answers given. The doctor doesn't necessarily be totally familiar with it, but if there's willingness to listen, I personally think it's a good doctor, who will work with you on tests and procedures.

    Good luck!

    Donna
    Stay safe

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    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.
    [3MG]

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

    Comment


    • #3
      Thank you Donna for putting all that into words. Greatly appreciated.
      ~Julia (48, F)

      Diagnosed with arthritis (2009), IC (2010 - symptoms since November 2007), & pre-diabetic (2017), TMJ/TMD (2019)

      Diet Modifications: IC diet
      Currently exploring how to align diabetic nutrition and IC diet (08/2017)

      Comment


      • #4
        You're welcome --- please let me know how it goes.

        Donna
        Stay safe

        Have you checked the ICN Shop?
        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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

        Sub-types https://www.ic-network.com/five-pote...markably-well/

        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

        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.
        [3MG]

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

        Comment


        • #5
          Most of my results are in and things are looking scary. I have my second appointment Tuesday morning. Side note my doc didn't have a clue about IC which doesn't suprise me. Depending upon Tuesday's appointment, I might reach out to a researcher at Vanderbilt.(Vandy is fairly close by).
          ~Julia (48, F)

          Diagnosed with arthritis (2009), IC (2010 - symptoms since November 2007), & pre-diabetic (2017), TMJ/TMD (2019)

          Diet Modifications: IC diet
          Currently exploring how to align diabetic nutrition and IC diet (08/2017)

          Comment


          • #6
            Thank you for the update --- keep me posted. If you don't feel comfortable with what you're being told, a second opinion is usually a good idea. It doesn't mean you have to change doctors and no ethical doctor will object to a second opinion.


            Donna
            Stay safe

            Have you checked the ICN Shop?
            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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

            Sub-types https://www.ic-network.com/five-pote...markably-well/

            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

            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.
            [3MG]

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

            Comment


            • #7
              Donna,
              Here is what the doctor diagnosis of the situation: Chronic lymphocytic leukemia (CLL)
              So now I'm going to be learning a whole new set of things. I may check in with a few specialists to look at some other angles. The dx doesn't feel right for me. However the lab work does support the dx. Lots of thinking. If you know anyone that has dealt with cancer and IC I would love to speak with them.
              Thank you Donna for always be supportive.
              <3

              Julia
              ~Julia (48, F)

              Diagnosed with arthritis (2009), IC (2010 - symptoms since November 2007), & pre-diabetic (2017), TMJ/TMD (2019)

              Diet Modifications: IC diet
              Currently exploring how to align diabetic nutrition and IC diet (08/2017)

              Comment


              • #8
                I haven't experienced leukemia, but have non-hodgkins lymphoma, which is under control, but not curable --- plus I had part of my colon removed due to a different form of cancer --- follow up reports indicate that the surgeon was able to remove the entire cancer. The portion of my colon that was removed was the ascending part and doesn't effect my digestive system. I have had chemo-therapy and taking part in a study program, which seems to be effective. The good thing is that I have scans every six months as a part of the program. Chemotherapy wasn't the easiest thing in the world --- I spent many hours at the cancer center with an IV feeding some scary stuff, but not as scary as cancer, and November will mark nine years since I was diagnosed so it was worth it.

                There have been many strides made in cancer care --- I know my cancer is different from yours, but at the same time, we have much in common. By the way, I did NOT lose hair.

                Warm hugs,
                Donna
                Stay safe

                Have you checked the ICN Shop?
                Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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

                Sub-types https://www.ic-network.com/five-pote...markably-well/

                Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                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.
                [3MG]

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

                Comment

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