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  • #16
    Hello Sandy:

    In terms of doctors trying to sell me something, my old uro was trying to see me CRANBERRY bladder supplements after he dx me with IC. He is a quack tooo. JERKS!

    Erika
    IC diagnosed officially via cysto/urodynamics 1/26/07

    Grade II Endometriosis diagnosed via lap 12/11/07

    "Fall down seven times, Stand up eight."

    "Life is a tragedy for those who feel and a comedy for those who think."

    Current Treatments:
    Interstim Since 5/25/07!
    Birth Control

    Comment


    • #17
      Sandy, I am so deeply so sorry about all of this. I am getting so angry about all of this head stuff. Believe me, if it was all about this head stuff, I would be grabbing and running with it, just so I don't have to go to these idiott doctors. I wonder if it is because we are womens. Do they treat men like this too? This is just getting so out of hand. First some can't get pain pills and now any kind of pain you are call crazy.

      If he won't take care of your physcial needs without pressing on about this stuff, I would ask him. Is this appointment about my physcial need or about your book. HMMMMMMMMM.

      Sending hugs, Trishann

      Comment


      • #18
        Ditto to what Trishann said...BTW I don't think any mental/ emotional would turn your limbs BLUE!!! Or make you sinuses breakout in sores. what a jerk!

        Erika
        IC diagnosed officially via cysto/urodynamics 1/26/07

        Grade II Endometriosis diagnosed via lap 12/11/07

        "Fall down seven times, Stand up eight."

        "Life is a tragedy for those who feel and a comedy for those who think."

        Current Treatments:
        Interstim Since 5/25/07!
        Birth Control

        Comment


        • #19
          Trishann, I do think it has something to do with women. I've been mistreated since this whole thing started years ago. I've come home crying more than once because a doctor told me that he would never give me pain meds, that all of it was in my head, that I was a hysterical woman, that my period caused all my pain, that my hormones were out of balance, on and on and on. I'm sick of it. I just rated that doctor on ratemds.com and put my experience and how he tried to sell me a book! That right there made me feel better!
          *IC-- Summer 2004; PFD--October 2005
          *Fibro--Fall 2000; CFS-- Fall 2000
          *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

          Total Abdominal Hysterectomy--adenomyosis--9\08

          04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

          Comment


          • #20
            AMEN to what all the ladies are saying about this 'doctor'

            If you searched his ancestry, you'd most likely find where generation after generation in his family 'pond' {that's where ducks like to be..quack, quack }sold 'Doctor Jerko's Miracle Cure", guaranteed to cure the patient"....that is until the patient awoke with an alcoholic hangover. I think Dr. Quacko needs to be shown that his 'research' was done decades ago and is just a load of s(*&!. I would be soooo tempted to sit in his waiting room, place pre-printed stickers on the ad for his book stating that it is just regurgitated horse crap (of course citing the info re:the research of years ago). Gosh, it makes me so mad for you and others that were and will continue to be treated this way. He should be held accountable for your time and trust. AAAAARRRGGGGGH!!!
            Dani


            -Bladder surgery to correct reflux-'68
            -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
            -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
            -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
            -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
            PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
            -DX'd with IBS in 2000
            -Rhabdomyolysis in 2001 (has not returned)
            -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
            -DX'd with TMJ in 2000-wear splint
            -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
            -DX'd with Epilepsy -2000
            -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
            -DX'd with Fibromyalgia (2006)

            Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!

            Comment


            • #21
              Good for you Sandy, enough is enough. Maybe it will help stop these doctors.

              Sending hugs, Trishann

              Comment


              • #22
                Sandy,

                I am so sorry that you wasted your time with this jerk! I know how long you have looked forward to this appt to try to get to the root of the problem. I definately think he is a quack too. I hope you will call your GP tomorrow, get your labs done there, and have him give you a referral to a different rhematologist. I wish so badly that you lived near me and could go to mine. She is wonderful. I saw her last a month and a half ago, and her nurse has called me 4 times since then! Once to tell me I had the severe Vitamin D definciency, (I didnt even know she was testing me for that!), once see if I was feeling better after I took the Rx she ordered, and yesterday b/c she had also tested me for Lidocaine toxicity b/c I am on the max amount of Licocaine patches, plus I take it vaginally and in my instills, so she was worried about that. Then the last call was today to tell me what to decrease my patch number to. I was shocked that she was STILL thinking about me after a month and a half!!! I am usually doing good to get a Dr. to think about me while I am in front of them!!!!

                So, believe me, there ARE good ones out there! If you still have no luck with finding one near you, I would love for you to come up and see mine. Bring the kiddos and make it a mini vacation. We have room enough for all of you.

                It makes me so angry that you were treated this way by that quack! Thank God you didnt believe him and you are smart enough to know better. What about all his poor patients that DO believe him??!!!

                I hope you get in somewhere soon. It is obvious to all of us that these are REAL, PHYSICAL symptoms of something, not some hokey psycho-babble crap.

                I hope your GP helps you until you can find a reliable Rhematologist.

                Hugs,
                Amy

                Comment


                • #23
                  Oh God Sandy, how horrible! I know how much you were looking forward to this appointment to get some answers and this is what happens!?!?! I hope that you can find another doc, do you have to get referrals with your insurance or can you go where you want? That's one of the only things I like about my insurance, I don't need referrals so I can go to any specialist, I just go. I'm glad that you figured out that it was all a bunch of crap and aren't buying into it.
                  Christine



                  I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                  1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                  2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                  I have tried every oral medication as well as rescue instills and DMSO.

                  I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                  Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                  Also proud mom to the best Bullmastiff on earth, Claus

                  Comment


                  • #24
                    Oh Sandy, I am sorry.
                    I have learned a few things about doctors, there are ALOT of bad ones out there!!!! You have to be careful with rheumy's. I have alot of weird symptoms also,(elevated ANA, sed rate, c-reactive protein etc). I saw one rheumy who told me he was sure I had scleroderma( this was only after looking at me for 5 minutes). Not sure if you ever heard of scleroderma, but it is one of the worst diseases you can get. Anyhow, thank Goodness I went and got a different opinion. I went to see a different rheumy who specialized in sclero and he said he did not think I had it. He did say he was sure I had something autoimmune going on though.
                    I honestly have never heard of this condition your rheumy was talking about. If he has his own book, look out, he is probably trying to push this diagnosis off on all his patients. I have never heard of that. I am sorry and if I were you, I would get another opinion.
                    Jen

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                    • #25
                      I think any Dr., who tries to sell you something during your appointment, is behaving totally unethical, you could report him him to the AMA.
                      Anyway my husband thinks so who was in the medical field.
                      Bianchi

                      Comment


                      • #26
                        Sandy that is so wrong! I was hoping you would make out ok and get some answers and help. I hate it when someone says it's all in your head and how can something way back when you were 5 cause all of this. Everyone in the world would have it. I'm sorry he didn't turn out to be nicer/better doctor for you. That really stinks. You were looking forward to a good day and he let you down. I knew someone who went to a foot doctor and he was into those natural pills and stuff. Like beet roots. I think he got commision each time he sold a bottle. I told the person it was stupid to pay big money for beet roots but they believed him. You have to be so carefull now. You never know what doc to believe anymore.

                        Comment


                        • #27
                          Sandy,

                          I am speechless. This doctor can be racked up with the "best of em"!
                          I am so sorry your visit was so rotten. Maybe after a few days you can start searching for a new one. Good Doctors are impossible to find these days!

                          I saw a book tonight called "How Doctors Think"

                          It was on the bestseller's list and I was half tempted to buy it.

                          I thought of you when I pulled up my screen and saw what happened to you today.

                          Wishing you a much brighter Tomorrow Sandy!

                          Kara
                          Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                          "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                          I also have some journals of my journeys, past and some present at:
                          http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                          Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                          Comment


                          • #28
                            Thank you so much everyone!! I really appreciate the support! I did call my GP and had to leave a message that I want an appt with him. They were at lunch and should be calling me back soon.

                            Amy, I would love to come visit. It's about to be summer, and I've been wondering what I could do with my kids. I'm sick of staying home all summer because I feel so crappy. I just might take you up on that...it would be fun! I wonder how far the drive is from here to KY?

                            I wrote another post about whether or not I should write a complaint letter to this doctor. I'm still livid about the whole thing, and you guys are right, there are VULNERABLE people out there grasping at any straw handed to them by the doctors and they might actually believe this doofus.

                            Why in the world does everything have to be such a challenge for me????? Even the eye doctor screwed up the RX and I've got to go back again for him to fix it so I can READ with my contacts in!

                            ARRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRGHHHHHHHHHHHHHH!
                            *IC-- Summer 2004; PFD--October 2005
                            *Fibro--Fall 2000; CFS-- Fall 2000
                            *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                            Total Abdominal Hysterectomy--adenomyosis--9\08

                            04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

                            Comment


                            • #29
                              When I was doing home health care I had a client who was extremely gullible. (you aren't of course, you were there in good faith). She always was going to homeopathic doctors (and I'm NOT knocking homeopathy) and they'd tell her it was this, then that, if you just take these herbs, if you just take those plants, your ulcer you've had for ten years will heal up. She WAS desperate for help and willing to try anything. I know there are more than her out there. It's sickening that there are doctors, who are sworn to do no harm, yet there they are.....

                              I'm really terribly sorry about this Sandy. I honestly don't know what to say. I'm so discouraged for you.
                              http://www.TheCraftyEwe.etsy.com

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