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  1. #11
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    My vote is 1.
    I not talented or patient enough to tap much of anything into a phone. In fact, I have messaging on my phone turned off. I guess I'm just to old to deal with it. Hats off to you, Shawn if you are tapping it in! :-)
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

  2. #12
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    Quote Originally Posted by Alysia View Post
    Welcome to the forum Shawn. Ears symptoms are sure wg related. When was your last rtx ? How much pred are you on ? Are you still on mtx ?
    Listen to your body and trust yourself. Dont let them tell you that its "anxiety" etc. I was accused for years of being hypochondriac, having "psycho somatic symptoms" etc. As a psychologist I even believed it. Untill wg almost killed me.

    HiAlysia,
    I just finished my rituxan end of Sept. 1 wk later had another flare. I have not been treated with any oral steroids. The rheumatologist seems to want to stay away from that since my symptoms appear to him to be limited.

    Prior to receiving the diagnosis, a psychologist at work told me when I was complaining about my joint pain, "Stop being so psychosomatic." She moved before I was diagnosed. But I sent her a text stating that just because you think someone is being psychosomatic does not make it true. Hmm... she never replied.

  3. #13
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    Hi Shawn,

    Rituximab generally takes several weeks to get the full main effect. Generally, steroids are part of induction therapy to reduce inflammation and help the patient feel better. You might want to re-visit this issue with your doctor.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  4. #14
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    Prior to receiving the diagnosis, a psychologist at work told me when I was complaining about my joint pain, "Stop being so psychosomatic." She moved before I was diagnosed. But I sent her a text stating that just because you think someone is being psychosomatic does not make it true. Hmm... she never replied.
    Wow, I think I would have done a lot more than send her a text, Shawn. I can't believe a med doc, especially a psychologist, would say anything like that. I hope she has a very short career.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

  5. #15
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    Quote Originally Posted by vdub View Post
    Wow, I think I would have done a lot more than send her a text, Shawn. I can't believe a med doc, especially a psychologist, would say anything like that. I hope she has a very short career.
    My ex psychologist told me so, for years, when my wg was smoldering before the acute onset. I even paid her. A lot. Worst. I thought that she was right. That I am just a crazy hypochondriac. I read books about psychosomatic disorders. I knew all the psychoanalytic theories about it. None of them cured me. Of course.

    It makes me mad when I see psychologists who continue to work like that. Too many do. I read on professional forums. Once I read about a psychologist who interpreted a nose bleeding of her patient as a symptom of anxiety in her presence. I wrote back there to send the poor patient to a decent ENT. But she ignored my comment. At other case they interpreted physical symptoms as psychosomatic and when I suggested a bit of humility I was attacked.
    So I quit commenting although I just want to write back to them : "totall bullshit !!!".

    Vent over.
    Last edited by Alysia; 11-18-2016 at 04:14 AM. Reason: Typing from my phone, vdub, some typos to correct ...
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  6. #16
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    Quote Originally Posted by shawn View Post
    HiAlysia,
    I just finished my rituxan end of Sept. 1 wk later had another flare. I have not been treated with any oral steroids. The rheumatologist seems to want to stay away from that since my symptoms appear to him to be limited.

    Prior to receiving the diagnosis, a psychologist at work told me when I was complaining about my joint pain, "Stop being so psychosomatic." She moved before I was diagnosed. But I sent her a text stating that just because you think someone is being psychosomatic does not make it true. Hmm... she never replied.
    It takes time to rtx to work. About 2-3 months. Most of us (if not all of us ?) Are on steroids meantime. If your dr. Is not a wg expert ask him to consult about you with an expert. Maybe in the vasculitis foundation.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  7. #17
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    Welcome to the forum and thank you for sharing your story. I wish you all the best in getting the best treatment possible and feeling better soon.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  8. #18
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    Quote Originally Posted by Alysia View Post
    My ex psychologist told me so, for years, when my wg was smoldering before the acute onset. I even paid her. A lot. Worst. I thought that she was right. That I am just a crazy hypochondriac. I read books about psychosomatic disorders. I knew all the psychoanalytic theories about it. None of them cured me. Of course.

    It makes me mad when I see psychologists who continue to work like that. Too many do. I read on professional forums. Once I read about a psychologist who interpreted a nose bleeding of her patient as a symptom of anxiety in her presence. I wrote back there to send the poor patient to a decent ENT. But she ignored my comment. At other case they interpreted physical symptoms as psychosomatic and when I suggested a bit of humility I was attacked.
    So I quit commenting although I just want to write back to them : "totall bullshit !!!".

    Vent over.
    i knew several physicians that were inclined to label real medical problems as psychosomatic and send the person to a psychologist for assessment and treatment. The good ones assessed the patient and sent a report back to the physicians saying the patient did not have any psychological basis for their somatic symptoms so it warranted further medical assessment and often the physical ailment was then discovered. Certain patients tend to get written off by physicians if they present too many symptoms that the physician cannot accurate diagnose or treat. a good psychologist can help the patient deal with the stress of such situation and help reduce their anxiety but that won't cure or help a problem like Wegs. Psychological counseling can help one adjust to Wegs and help one learn to manage it better but it won'treplace the meds we need too.
    Knowledge is power! Wisdom is using it to make good decisions!

  9. #19
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    Quote Originally Posted by drz View Post
    i knew several physicians that were inclined to label real medical problems as psychosomatic and send the person to a psychologist for assessment and treatment. The good ones assessed the patient and sent a report back to the physicians saying the patient did not have any psychological basis for their somatic symptoms so it warranted further medical assessment and often the physical ailment was then discovered. Certain patients tend to get written off by physicians if they present too many symptoms that the physician cannot accurate diagnose or treat. a good psychologist can help the patient deal with the stress of such situation and help reduce their anxiety but that won't cure or help a problem like Wegs. Psychological counseling can help one adjust to Wegs and help one learn to manage it better but it won'treplace the meds we need too.
    Unfortunately if you go "psychoanalyticaly" you can find issues on which to blame the physical symptoms.. I saw it too many times
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  10. #20
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    Quote Originally Posted by Middle of no where View Post
    Check out book by Sarah Ballentyne
    The Paleo Approch
    Reverse Autoimmune disease and heal the body.
    i atribute my current health to this book
    @Middle of no where Have sent you a PM. (I think)

    Lucky

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