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Thread: Negative ANCA

  1. #11
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    Quote Originally Posted by jvilner View Post
    Question as I am very confused now. Been told that I need dilation on esophagus. Barium swallow shows web/ring. I've had swallowing problems for years. No airway problems. Was dxed with WG only years later when had ear problems. Don't know 100% if swallowing is part of WG problem but am being treated accordingly. My question is 1. Anyone had dilation on esophagus not trachea and 2. Should a gastroenterologist or Ent do the procedure? Help!!
    I would look for who ever has the most experience doing the procedure.
    Knowledge is power! Wisdom is using it to make good decisions!

  2. #12
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    Hello all,

    I'm writing this because I'm at my wit's end. Up till last night, I was going through psychological torture. I had a dilation done in December, am still undiagnosed, have a trip planned (for the 20th), out of country to somewhere warm and away from work (I'm a workaholic...). All test results are negative, biopsy of affected area was negative. It it safe to go abroad in this state?

    Two weeks after being off postoperative prednisone (mid-Jan), the narrowing was back at 20%. As mentioned in another thread, I have a rheumy appointment scheduled for the 11th of March...but waiting has been like torture. I reached out to my surgeon's office in a panic about a week ago, because the narrowing was becoming VERY acute again. He had me come in, and upon confirmation of the narrowing's progression, was prescribed a newer, higher dose of prednisone...it makes me feel like crap, and is affecting all aspects of my life. LIFE SUCKS, but I keep telling myself it could be worse.

    What I'm wondering - does the prednisone have any effect, as a steroid, on scarring tissue that may exist? What exactly is it doing, physically to that narrowing?

    And what sorts of tests are done at the rheumatologist appointment (hoping to get specifics)....AND, how long will they make me wait for any sort of test results for a pinned diagnosis? I'm hoping that they look at one of a broad range of diagnoses before identifying the most logical based on symptoms (which I have very little of). I smiled when I read that article about how the diagnosis for that doggy was established after "...diagnosis investigations for infectious, neoplastic, or other inflammatory conditions all provided negative results." Sounds like this dog had a great doc. To humour myself, I idly considered going to my cats' vet about my symptoms.

    Which brings me to my other question: does anyone know how thoroughly it has been explored that latent pathogens could cause these symptoms they attribute to Wegener's? The immune system attacking places that it finds these sneaky, elusive pathogens....? Is there anything I can read about how this has been explored? I can't seem to find anything conclusive.

  3. #13
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    Hi Brillantlight, I think we all understand how frustrating this is for you and how scared you must be at this point.
    It is a good thing you have been prescribed a higher dose of Prednisone. Prednisone does do crazy things to your emotions but it can put the brakes on symptoms until a proper diagnosis is found.
    To be diagnosis I had a lung biopsy, urine and blood test. But a lot was based on my symptoms.
    I know it's easy for me to say but hold on you are nearly there and in a little over a week you might finally have some answers.
    Keep your chin up.

  4. #14
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    Quote Originally Posted by Swb21188 View Post
    Hi Brillantlight, I think we all understand how frustrating this is for you and how scared you must be at this point.
    It is a good thing you have been prescribed a higher dose of Prednisone. Prednisone does do crazy things to your emotions but it can put the brakes on symptoms until a proper diagnosis is found.
    To be diagnosis I had a lung biopsy, urine and blood test. But a lot was based on my symptoms.
    I know it's easy for me to say but hold on you are nearly there and in a little over a week you might finally have some answers.
    Keep your chin up.
    Thanks for the reply. Appreciate the support.
    Last edited by BrilliantLight; 03-03-2015 at 01:57 AM. Reason: spellllling.

  5. #15
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    Some people travel with Wegs and do OK. A number on here have had long trips. Going to a remote area with poor access to emergency care is probably not a good idea though if your condition is not thought stable. If you do travel away from your treatment team, getting good travel insurance that covers emergency evacuation would seem essential to me to enjoy the trip with some peace of mind since stress caused by anxiety is bad for Wegs and our health too.
    Knowledge is power! Wisdom is using it to make good decisions!

  6. #16
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    Quote Originally Posted by drz View Post
    Some people travel with Wegs and do OK. A number on here have had long trips. Going to a remote area with poor access to emergency care is probably not a good idea though if your condition is not thought stable. If you do travel away from your treatment team, getting good travel insurance that covers emergency evacuation would seem essential to me to enjoy the trip with some peace of mind since stress caused by anxiety is bad for Wegs and our health too.
    Yes, I have done it a couple of times. Twice to the USA and once to Fiji. I am just about to take another trip to USA.

    If you plan everything right and have all your meds with you and any meds for unforseen problems ie. colds, gastro etc, then there is no reason why you can't travel.

    I think deep down, I keep choosing USA because I know that they have some great medical care for WG, if I every did need it.

    However, last time I went (2012) my Rheumy wrote out a plan of meds that I could increase and by how much, if I found myself in trouble. Just enough, so that I could get back home if required.
    Also, as drz said, a good travel insurance is essential.

    I presume that you have already travelled by now, and I hope it was uneventful in the Wegs variety, but awesome on the holiday scale
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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