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Thread: Now I'm getting angry

  1. #21
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    Thank you for your reply. Sorry your got some stuff to deal with.
    I still feel lucky even though I always feel awful. Yes I'm more scared of the drugs than the disease. I hate the feel you get. I might be in some sort of remission, I'm not so positive. Just so tired all the time.
    I don't say too much because for one I don't want meds and the other I think they think I'm a hypochondriac.
    My thoughts are with you.

  2. #22
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    I rarely, if ever, post. I'm too sick and too disgusted. As far as my doctors, I'm completely fed up! My labs show no Wegeners, but my pulmonologist says I have all the symptoms. My rheumatologist ignores my concerns. He just prescribed Arava a few weeks ago for my RA/PSA. I won't take it. The Methotrexate last winter made me so sick! I'm on Humira and Prednisone. My pain management doctor has started being downright nasty to me and other patients. He suddenly, after 2 years, says there is nothing wrong with me! WTH? My nose is a nightmare! Bleeding, crusting, perforated septum, burning, pain, unable to breathe, dry as dirt! And I went to a different ENT who told me that a perforated septum is not caused by Wegeners. Translation: He thinks I use cocaine? Pathetic! I hope that all of you have or find good doctors. Mine are terrible!

  3. #23
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    Quote Originally Posted by spiritscript View Post
    I rarely, if ever, post. I'm too sick and too disgusted. As far as my doctors, I'm completely fed up! My labs show no Wegeners, but my pulmonologist says I have all the symptoms. My rheumatologist ignores my concerns. He just prescribed Arava a few weeks ago for my RA/PSA. I won't take it. The Methotrexate last winter made me so sick! I'm on Humira and Prednisone. My pain management doctor has started being downright nasty to me and other patients. He suddenly, after 2 years, says there is nothing wrong with me! WTH? My nose is a nightmare! Bleeding, crusting, perforated septum, burning, pain, unable to breathe, dry as dirt! And I went to a different ENT who told me that a perforated septum is not caused by Wegeners. Translation: He thinks I use cocaine? Pathetic! I hope that all of you have or find good doctors. Mine are terrible!
    Spiritscript. I'm so sorry. That was the story of my life before diagnosis. Please travel to a nearby teaching hospital. Surely you will find better help and understand of your disease. WG is a hard one to treat only because the naked eye can't always see and the doctors are not educated. There is a good life with good control of your symptoms but it going to come from finding a more knowledgeable doctor to listen and treat your symptoms. Reach out. Go get another opinion and another one if necessary. I have everything you have going on right now too. I'm on 40mg prednisone and it's helping. But I'll need treatment soon. For 34 yrs my doctor never used the labs to confirm. It's the biopsy and the symptoms. Throw the labs out if they don't work or go to another lab they are not all equal ya know. Please reach out. Let me know if I can help you. I'm in California and I know Ucsf has a good ENT and rheumy too and possibly UCC Davis as well. The east coast has so many.

  4. #24
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    Quote Originally Posted by daystarr8 View Post
    Spiritscript. I'm so sorry. That was the story of my life before diagnosis. Please travel to a nearby teaching hospital. Surely you will find better help and understand of your disease. WG is a hard one to treat only because the naked eye can't always see and the doctors are not educated. There is a good life with good control of your symptoms but it going to come from finding a more knowledgeable doctor to listen and treat your symptoms. Reach out. Go get another opinion and another one if necessary. I have everything you have going on right now too. I'm on 40mg prednisone and it's helping. But I'll need treatment soon. For 34 yrs my doctor never used the labs to confirm. It's the biopsy and the symptoms. Throw the labs out if they don't work or go to another lab they are not all equal ya know. Please reach out. Let me know if I can help you. I'm in California and I know Ucsf has a good ENT and rheumy too and possibly UCC Davis as well. The east coast has so many.
    Thank you so very much!

  5. #25
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    Quote Originally Posted by spiritscript View Post
    I rarely, if ever, post. I'm too sick and too disgusted. As far as my doctors, I'm completely fed up! My labs show no Wegeners, but my pulmonologist says I have all the symptoms. My rheumatologist ignores my concerns. He just prescribed Arava a few weeks ago for my RA/PSA. I won't take it. The Methotrexate last winter made me so sick! I'm on Humira and Prednisone. My pain management doctor has started being downright nasty to me and other patients. He suddenly, after 2 years, says there is nothing wrong with me! WTH? My nose is a nightmare! Bleeding, crusting, perforated septum, burning, pain, unable to breathe, dry as dirt! And I went to a different ENT who told me that a perforated septum is not caused by Wegeners. Translation: He thinks I use cocaine? Pathetic! I hope that all of you have or find good doctors. Mine are terrible!
    I would go see Merkel in Philly and get his assessment and advice.
    Knowledge is power! Wisdom is using it to make good decisions!

  6. #26
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    Quote Originally Posted by drz View Post
    I would go see Merkel in Philly and get his assessment and advice.
    Yes go see him. I wrote him an email last week and he responded. He is the one who told me about UCSF. I looked him up after watching a YouTube that had been posted. Please contact him. Let him help you. You won't regret seeing someone who knows the disease

  7. #27
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    Hi spirit script.
    I do feel for you and others in the same situation.
    Its so frustrating.
    Maybe as a group could we all somehow raise the stakes a bit? I wonder if there is some way that we can raise awareness of this disease. There are so many sufferers and many with complaints like yours of unprofessional medical treatment. I should say substandard treatment. The meds they expect us to take are terrible.
    Im actually dealing so much better with no meds. My disease though is not life threatening at the the moment.
    I just want to feel normal.

  8. #28
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    Quote Originally Posted by PJ2010 View Post
    Hi spirit script.
    I do feel for you and others in the same situation.
    Its so frustrating.
    Maybe as a group could we all somehow raise the stakes a bit? I wonder if there is some way that we can raise awareness of this disease. There are so many sufferers and many with complaints like yours of unprofessional medical treatment. I should say substandard treatment. The meds they expect us to take are terrible.
    Im actually dealing so much better with no meds. My disease though is not life threatening at the the moment.
    I just want to feel normal.
    Yes, you have a great idea! As far as meds, I have many diagnoses and am on many meds. My plan 2 years ago was to address the problems, get better and get off the meds. But there is a major lack of caring doctors, resources, etc. I will type more into detail over the weekend. Again, your idea is good!!!

  9. #29
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    I look forward to hearing more.
    You know, my body just constantly hurts. I feel tired all the time.
    I operate a car repair business. The work is quite physical and requires a sharp mind.
    Physically, I have lost much of my strength.
    When diagnosing engine problems, what's needed is a broad approach to reach a conclusion and repair.
    Some times I find my brain just won't handle problems like it should.
    I find sleep is my best remedy. I need at least 8 hours of sleep each night to function. My mind and body seem to demand it.
    Stay well.

  10. #30
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    He's nuts! Just like too many doctors these days!

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