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  • #1

    I'm annoyed. :(

    I went to the doctor...the rheumatologist I have waited and waited to see. My appt was at 1 oclock and they took two patients in before me. I was supposed to be the first patient after lunch. I finally got back to the room at 1:45...had to strip and put on that stupid gown. The doctor was very thourough, looked at my joints, did a lot of pressing and pinching around on my muscles and joints, saw my legs and hands were blue, said I have Raynauds. Said I probably have Lupus, but he'd run some more definitive tests. I was ok with all of that. He also said Sjoren's because of my dry eyes and mouth, plus the nose sores..talked about my kidneys.

    The part that REALLY upset me was when he asked me if I'd heard of TMS. No, what IS TMS? Well, it turns out its MORE psycobabble about fibromyalgia and "hidden" stress causing lack of oxygen to get to the muscles and joints. It's MENTAL. He said even though I probably DO have Lupus, he says I have this TMS stuff. Its called Tension Myositis Syndrome....fibro of the mind.

    I was so angry I was about in tears, and now that I'm FINALLY home I AM in tears. It took me YEARS to find a group of doctors who believed me and told me I had PHYSICAL problems that caused this pain. Now this man comes in, looks at me for 30 minutes and decides that I have this TMS, which is fibro with a twist. I told him I'm stressed over my daughter but in general I don't have much stress because I'm not working. I stay at home, I take care of my kids and house and with the exception of the last few months things have been stable. He told me it could have been something that happened when I was 4 or 5 or even 15 that has built up unconsciously to cause me pain. I'm MAD. I'm NOT crazy, I AM NOT. I do not have a psychological problem, those were all ruled out when this hell started for me.

    So, I went to go have my labs drawn and there were about 15 people waiting for ONE lab tech. I left. I'll go have them drawn but I was just OVER it. I WANT my labs done, I do. I want some definitive answers. TO TOP IT OFF, HE SAID I COULD BUY A BOOK AT THE FRONT DESK ON THIS TMS!!!!!!! HE SELLS THE BOOOOOOOOKS!!!!!!!!!!!!!!!!!!! Well........***** his book....

    How many times do we have to be told things are all in our heads? I know he didnt totally discount me, he really thinks I have lupus and sjorens, but also I have a mental disorder that causes me pain.

    Does that mental disorder cause the rashes and the itching and the kidney problems and the rest of it?

    I want to scream. I can't stop crying. The entire time I thought he was totally believing me because of the noises he was making...like "huh", "ahhhh", "oh my, it really hurts there doesn't it?", "your legs are so blue", "your joints are swollen in your hands", etc....then he tells me this psychobabble and wants to SELL ME A BOOK!!!!!!!!!!!!!!!!!!!!!!!!!!!



    I am SO not happy!
    *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.
    Tags: None
  • #2
    If you ask me....that doctor doesn't know diddly squat!!! You're not crazy! Please dont let this stupid man make you cry. I suggest you go to another dr or wait till you get the results. Please dont cry, lots of hugs!!!


    Rachel
    ***Rachel***

    Dance like no one is watching
    Love like you've never been hurt
    Live today like it's your last

    Dxd with IC in June '06

    Comment

    • #3
      omg how awful Sandy... I would of asked him if he had a degree in physology.. howun fair to you.
      'The will of God will never take you where the Grace of God will not protect you.'

      Comment

      • #4
        Sandy,
        I am so sorry your doctor visit turned out that way. I just don't understand why he acted like that. I would seriously look into seeing another doctor. i know it is frustrating but you do not deserve to be treated that way. You are employing him and he does not have the right to tell you it is mental when you have "real diseases". That angers me!!!! Please find another doctor.
        Miss Bessie

        Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

        Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

        Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

        Comment

        • #5
          I think the man is trying to make money off this book. Has ANYONE been offered to buy a book at the doctor's office???????? It seems quite strange to me. I'm wondering if he wrote the stupid book.

          I'm trying to get over it and chalk it up to yet another goofy doctor's appt...Lord knows there have been MANY in the past and I lived. This one was so important to me. He wouldnt rx a small dose of prednisone for me because he wanted my labs back, but said they take 3 weeks. I know in 3 weeks my symptoms are going to return. I seem to do ok on 10mg a day of prednisone. I guess I'll have to ask my GP to fill it for me again.

          I don't want to live like this anymore...NOT saying I want to die, I mean I dont want to have these crazy symptoms and this man was some hope for me. I dont have a choice right now but to go back and get the labs drawn and see what they say.

          Thanks everyone....I'm sorry for the rant, but the whole thing is just nuts.
          *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

          • #6
            Oh yeah, and I can be cured by "knowlege therapy" meaning if I know what it is, I can make it go away, simple as that.........Bull.....
            *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

            • #7
              I bet he DID write that book ... I am almost certain he also created this TMS syndrome to explain away pains he could not diagnose. I'm going to do a PubMed search on this thing to see if there is any real, proven research that this exists, because it sounds a bit hokey to me.

              That is just terrible that you waited all this time and then had to hear this. I'm so sorry
              ****
              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.

              Comment

              • #8
                I agree....

                ...find another doctor. I know you waited a long time to see the rheum., but he sounds like a quacko! I'm always wary of a doctor who says, "I wrote a book about it,...buy it and read about your new DX....I'm soooo smart". This is NOT in your mind...it is in your BODY....what a witch doctor! He definitely sounds like he doesn't know how to treat you, so he's found a way to make some money on the side by making up this 'new condition'. I would call him and tell him you have his diagnosis in a nutshell...it's called "Delusions of Grandeur"!!!! What a crock he is trying to sell. Unbelievable. Hang in there, find a real doctor and keep believing in yourself....you know what's going on and are simply asking for a doctor to treat you with dignity. I would have been sooooo p&^^&%!!!


                For all to read and beware: After my 3rd gyn surgery and I was still suffering with pain, my gyn told me "You're just having ghost nerve pain and are dealing with menopause". He then picked up HIS NEW BOOK and told me the same...."You can purchase it...it will really help you during this transitional time". Six months later, my new gyn opened me up and found halves of my two ovaries, one which had 2 huge cysts on it, endo, and my bladder was adhered to my abdominal wall. WHAT A JERK AND A CASE FOR MALPRACTICE! I tried to find a lawyer to help me 'take action' against this 'doctor', but in my state, the laws for malpractice highly favor the doctor and it's almost impossible to sue. That's what I get for believing that 'the best doctor in his field of practice" and his partner were treating me professionally....when they screwed up my life!
                Dani
                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

                • #9
                  Sandy -- you'll be interested to know that with a preliminary search of all the hundreds of thousands of medical journals in the National Library of Medicine (http://www.pubmed.gov), the last mentions of tension myositis were in the late 1970s, when doctors loved to call women crazy. There are NO molecular or cellular studies proving this condition exists, either -- just a few "editorial" type articles in the Journal of Family Practice, of all things... one of them states that they had a group of patients that went to psychotherapy for chronic back and neck pain and got better, but it's a crock IMHO.

                  And -- here's the Wikipedia article on it -- http://en.wikipedia.org/wiki/Tension_Myositis_Syndrome

                  Note that the article points out that "Most physicians know little or nothing about (this) work, as it has received relatively little attention in recognized, peer-reviewed medical journals," just as I found when I searched. Even Wikipedia writes about it like it's a crock and a half and states the theory is NOT widely accepted.

                  So, I don't believe this guy -- he's trying to sell books about what seems to be an outdated theory.
                  Last edited by Sarojini; 03-22-2007, 09:38 AM.
                  ****
                  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.

                  Comment

                  • #10
                    Do a google search on Tension Myositis Syndrome...it's out there, and from what I read it was created by a major quack. I think I'll do a search for this on quackwatch. I'm so angry. Thanks Jen. If anyone can find out if it's BS I know you can!!!
                    *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

                    • #11
                      Yep... I Googled in addition to searched the medical databases, and posted the link to the Wikipedia article on TMS up in my last post when I edited it...

                      As you'll see up there, I believe it is BS.
                      ****
                      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.

                      Comment

                      • #12
                        Sandy...This guy is full of "hooy". I would stay clear of any so called "doctor" who tells you to stop by the desk and buy a book about what he just said. I think that is malpractice. He should have his licence yanked away from him. Talk about a quack. It reminds me of the old medicine shows. "Come on, come all and buy my snake oil. It will cure you of all your diseases." Okay everyone...all together now...Quack, Quack, Quack!!!!!!
                        Sharon

                        Shopping??? Did someone mention shopping? I'll get my hat... ;-)

                        Where I can be found most days.



                        Link to the ICN Patient Handbook:
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                        IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                        Comment

                        • #13
                          I just did a quackwatch search and --- yup! it's there! I suggest you read it before you go for those tests. Is there another doc you can see for a second opinion?

                          Donna
                          Stay safe


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                          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

                          • #14
                            Thank you Jen. I feel better, in a way. At least I know he's a quack now...so yes Sharon, quack, quack, QUACK! Tom said he'd charge me 60 bucks just to tell me to go to my quiet happy place and I'd be healed. LOL...said he just did as much good as that doctor's appt did. I'm so greatful I dont have a copay or I'd REALLY be mad. Too bad my insurance has to pay for it.

                            Knowlege therapy.......if I know what it is, I'm cured. phooey!!!!!!! There's a lot of talk on those web pages about back pain caused by emotional causes....when he pushed on my KIDNEYS I had pain. It's obviously kidney pain, but he chalked it up to this psycho back pain stuff. When I DO have back pain that's not kidney related it's in my lower back, not flank pain. I only have an RN degree and I know the difference. I feel violated in a way, and totally 'taken' by this doctor.

                            When I had to fill out the psychosocial pain sheet about my stress levels, if I'd ever been raped, or abused, etc, I got a pang of worry....little did I know.

                            I decided to take this lab sheet to my GP, get HIM to run these blood tests for me, and then get him to RX my 10 mg of prednisone. This way I never have to talk to Dr. Quack again as long as I live. Anyone in Charlotte looking for a rheumatologist, email me off the site so I can warn you about this guy. I don't want to do it through this website for obvious reasons. But, I want to warn every single person I can about him. You can email me through the link in my profile.

                            I found some stuff on this on quackwatch. org too....I wonder how you submit something to that site............Not that I want revenge......but yeah, I want revenge!!!!!!!!

                            I feel better now. Thanks everyone!!!!!!!!!
                            *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

                            • #15
                              Donna, thanks! I saw that too. I looked up the tests and they're all Sojornes, Lupus specific tests. So at least he didn't try to charge my insurance for a bunch of hooey tests.
                              *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

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