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Thread: Hey all, new member here

  1. #11
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    Hi, Pysborg and welcome. I only have sinus and subglottic/tracheal involvement as well. It may be very hard for them to biopsy for an official diagnosis (even after I had surgery on my subglottis the biopsy didn't yield any WG involvement, but they can tell through your clinical symptoms and blood work. I don't know of other diseases that cause elevated P3 and as far as tracheal stenosis (which is what I am assuming you have), that can be caused by WG or sarcoidosis, primarily. There is also something called idiopathic stenosis, which they don't know the cause of (obviously), but my doc has only seen that in middle aged women, and extremely rarely at that.

  2. #12
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    Psyborg, the immunosuppressants that are the big liver trouble-makers are imuran and methotrexate (mtx). The other drugs we use are not famous for causing liver problems, but of course any drug in the world is stressful to the liver.

    Knowing your history makes me even more relieved that you're going to a major center for help. There's no way your case could be managed by a non-Wegs specialist.

  3. #13
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    Quote Originally Posted by pberggren1 View Post
    Can't beat CC. And being part of the Borg you will just assimilate someone that does not cooperate with you.
    Excellent advice. I should have just assimilated the ninny who botched my care early on! Although that would have brought the collective IQ and ethics down considerably.

  4. #14
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    Quote Originally Posted by JanW View Post
    Hi, Pysborg and welcome. I only have sinus and subglottic/tracheal involvement as well. It may be very hard for them to biopsy for an official diagnosis (even after I had surgery on my subglottis the biopsy didn't yield any WG involvement, but they can tell through your clinical symptoms and blood work. I don't know of other diseases that cause elevated P3 and as far as tracheal stenosis (which is what I am assuming you have), that can be caused by WG or sarcoidosis, primarily. There is also something called idiopathic stenosis, which they don't know the cause of (obviously), but my doc has only seen that in middle aged women, and extremely rarely at that.
    I have to think it's tracheal stenosis based on the symptoms. The throat restriction does bother me more than other symptoms as occasionally it almost feels like it's trying to close off. That said my oxygen has never been a problem so I think it might be a slight bit in my head there, I've always had a fear of suffocation.

  5. #15
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    Quote Originally Posted by Sangye View Post
    Psyborg, the immunosuppressants that are the big liver trouble-makers are imuran and methotrexate (mtx). The other drugs we use are not famous for causing liver problems, but of course any drug in the world is stressful to the liver.

    Knowing your history makes me even more relieved that you're going to a major center for help. There's no way your case could be managed by a non-Wegs specialist.
    That's good to know. I was a bit worried about the liver making this very difficult to treat.

  6. #16
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    Quote Originally Posted by elephant View Post
    Hi Pysborg, so glad your going to the Cleveland Clinic...I go there too. I had my Gallbladder removed in march. I feel your pain I had in the last 5 years I had 8 surgeries and now going for cataract surgery in the fall and I am only 45 yrs old.
    3 Surgeries here in the last year and a half, and only 38...so I definitely sympathize there. The worst part of the whole thing is that after losing considerable weight I felt like a million bucks in Feb-Mar. Then I got the cough (first symptom I had) and it's kind of taken a bit of the shine off of it .

  7. #17
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    Quote Originally Posted by Sangye View Post
    Excellent advice. I should have just assimilated the ninny who botched my care early on! Although that would have brought the collective IQ and ethics down considerably.
    Ya, we don't want you any dumber!

  8. #18
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    Quote Originally Posted by pberggren1 View Post
    Ya, we don't want you any dumber!
    ROTFL-- There are 2 ways to interpret this comment.

  9. #19
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    What I meant to say was, Don't lose your sense of humour!

  10. #20
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    Quote Originally Posted by pberggren1 View Post
    Ya, we don't want you any dumber!
    Want to go halves on the flowers to sangye???

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