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Lessons from The Doctors TV show: Developing an "elevator speech" about IC

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  • #16
    It is my understanding that the Doctors discussed bladder problems again, but glossed over IC. I couldn't find the clip online.

    This is also a good topic for Mystery Diagnosis, right? Has anyone written there?
    Julie Beyer, MA, RDN
    IC Dietitian, Patient Advocate, Speaker, & Author


    Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

    Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

    You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

    ........ ........


    Other IC Diet Resources:

    IC Diet Webinar
    IC Diet Website
    For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
    Free IC Diet Booklet: What Can I Eat?
    Confident Choices IC Diet Blog
    IC Diet Newsletter


    *Let's Connect!*

    Comment


    • #17
      tfleisher

      I agree when someone ask me oh my you have lost so much weight how did you do it. I hate to say I have IC and have had alot of trouble the last few months. No one has ever heard of it. I hate to explain it to people I should get handouts to pass around. I have been doing alot better on Elmiron and Elavil I am hopeful that I can keep feeling this well. If only the Dr. OZ show would do a show on IC more people would understand. Maybe if we all try to contact the show it would make a good impression that their are millions of people mostly women that have this condition. Just remember there is hope.

      Comment


      • #18
        Everyone please read this.

        Both The Doctors and Dr. Oz have mentioned interstitial cystitis/painful bladder syndrome on their shows. Generally, it is only a few minutes long and wound up in other conversation about bladder/urine disorders. I am not sure we can get them to repeat these talks over and over without different angles to appeal to their producers.

        For example, when you read their appeals for people on upcoming shows, don't necessarily look for bladder issues, but look for:

        *chronic pain
        *inflammatory conditions
        *unintended weight loss or weight gain
        *sleep disruptions
        *sexual dysfunction
        *pain with intercourse
        *relationship issues as they pertain to diseases
        *dealing with multiple health conditions
        *traveling with chronic diseas
        *uncommon special diets
        *stress management and chronic conditions
        *hair loss (if you are on Elmiron and lost hair)
        *female medical issues
        *male medical issues
        *exercise restrictions because of disease
        *pregnancy complications (or high-risk pregnancies)
        *lifestyle challenges of chronic illness
        *job discrimination with chronic illness
        *alternative jobs for those with disabilities

        etc...................pretty much anything they are asking for, someone in the IC community can speak to.

        For future shows see these links:

        http://www.doctoroz.com/be-on-the-show

        http://www.thedoctorstv.com/main/tell_us_index There are some good ones listed as of the day I posted this!)

        http://www.rachaelrayshow.com/show-info/be-on-the-show/

        Just keep trying!!!! Everything we get someone to utter the words "interstitial cystitis" or "painful bladder" we gain traction!
        Julie Beyer, MA, RDN
        IC Dietitian, Patient Advocate, Speaker, & Author


        Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

        Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

        You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

        ........ ........


        Other IC Diet Resources:

        IC Diet Webinar
        IC Diet Website
        For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
        Free IC Diet Booklet: What Can I Eat?
        Confident Choices IC Diet Blog
        IC Diet Newsletter


        *Let's Connect!*

        Comment


        • #19
          Natalie41, I was wondering if you wouldn't mind sharing your MS journey. I am currently trying to see a neurologist because I have numbness and tingling in both hands,legs,and feet. I was in a car accident in 2010, so I know I have a pinched nerve on the right side of my body but what I feel seems to go beyond this. The symptoms have grown worse. I get muscle aches so bad in my legs at times it feels like I have ran a marathon or that I was run over by a car. Also joint pain and fatigue. I have been diagnosed with IC since 06 and have had muscle/joint and fatigue since then. I thought it was lupus that was negative. I believe I have fibro and need to check that but I growing more concerned that I may have MS due to the tingling/numbness that doesn't seem to go away these past few weeks. I have had these symptoms on and off for at least two years now.

          My primary doc. is not supportive and I need to change. Had many allergies these past months, as well as unexplained hair loss (had all blood test done). My ferritin level was low but with iron supplements the hair is still falling out. If you wouldn't mind sharing your story I would greatly appreciate it. It took my 3 yrs to be diagnosed with IC and it was a horrible process and I just don't want that to happen in trying to get tested for MS. My current primary seems to be annoyed with all my concerns and since the lupus test was negative did not want to refer my further even though she believes I may have Fibro. I know I need to change but since she is the second one a year I feel so frustrated, like I am always fighting to get something done. I find myself questioning myself and wondering why I am focusing on this conditon, MS. When I mentioned this to others they say,
          " you don't have that." I wonder if I just want to be diagnosed with it so that I can finally have an answer to all these aliments. I know that I have trust my inituition and I certainly am going to, it's just that this whole process takes so much out of you.

          If you wouldn't mind I would love to know more about your MS journey. Many Blessings to you!

          Comment


          • #20
            My old uro thought I had MS, I went to a neuro who did tests and said not to MS.

            I have had to go to a new nero who thinks I was misdiagnosed and do have MS, he wants me to be reevaluated for MS. He wants me to see one of the leading specialists in our area for MS. I had pretty much decided between me and my Doc that I wouldn't go see this neuro, I am getting tired of all the tests etc.

            Then I was talking to my neighbor who has more advanced MS and she said her's all started like mine, and she knows other women with MS that the problem first presented as multiple urinary tracked infections, which turned out from their bladders not emptying, and this is one of my main problems.

            I am not too sure what to think, I think when women have retention unless they can find an obvious cause then they think MS.

            So we will see I should be seeing this neuro in the summer sometime, he travels every couple of months closer to where I live so I am waiting for that.

            good Luck MG
            My are with you all. May you all find a way to peace and joy in your lives.

            Comment


            • #21
              Wow, that's crazy about MS showing as UTI's at first. it's been awhile so whatever happened with that?
              symptoms when in a flare:

              I feel everything in my urethra but I know its really my bladder. Pressure, stinging, urgency,tingling feeling thats hard to describe.
              *I have a fibroid on my uterus near my bladder.

              Medication
              100mg Amitripyline ( I have seriously gained almost 50lbs on this drug but I feel it works)
              Flexoril 10mg (doesn't work)
              Hydrocodone 5/325 PRN
              Cetalopram 40mg *severe anxiety over flare

              Physical therapy hasnt really helped but I love her! I've learned so much! She states that my muscles around
              My urethra are very tight.

              currently seeing a Gyn in my town and a Uro in Seattle (4 hrs away)

              I have had lots of long term remissions. Currently been struggling with good & bad days since Jan 2012



              find me on Facebook! Brandy Schildknecht Covington

              Comment


              • #22
                Didn't cause it, can't control it, can't control it... so I'll take care of myself.

                Comment


                • #23
                  Have you ladies had a cystoscopy to diagnose your IC and you don't have to have the what ever its called where they put the fluid in your bladder and stretch it to get a diagnosis because if you have it there will be raw irritated places where the lining in your bladder is missing.

                  Comment


                  • #24
                    Hello mothergoose , what is ms I have problem emptying my bladder too is not function normally I would like to know what is the ms test is all about thanks so much ....

                    Comment


                    • #25
                      Originally posted by Ali11091209 View Post
                      Hello mothergoose , what is ms I have problem emptying my bladder too is not function normally I would like to know what is the ms test is all about thanks so much ....
                      MS is multiple sclerosis.

                      Donna
                      Stay safe


                      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                      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


                      • #26
                        Re: Lessons from The Doctors TV show: Developing an "elevator speech" about IC

                        Hello Natalie, Nice to meet you. I am new to the group. Blancherose

                        Comment


                        • #27
                          Re: Lessons from The Doctors TV show: Developing an "elevator speech" about IC

                          Thanks Julie for that wonderful stuff you wrote. I been suffering with IC for 4 years but now I found some wonderful ways to keep my bladder from flaring up. Threw mediation and pelvic excercises. I also cut out the caffeine 🙏 thank the lord and everyone on here for such postive attitudes and since I signed up I've read great stuff thanks and God bless all.

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