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Thread: Hey all, new member here

  1. #21
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    I don't think there are enough flower shops in the area.

  2. #22
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    Quote Originally Posted by Hammy8241 View Post
    Want to go halves on the flowers to sangye???
    LOL-- Oh my gosh, this gave me a laugh.

  3. #23
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    Well, kinda nervous today...the trip to Cleveland is tomorrow. Worried they can't confirm WG or that they can't start treating me. The stress at work has gotten me feeling bad again, and not much I can say about it without any sort of diagnosis. It's not as bad with the Pred as it was before, but the fatigue, dizziness, and cough have gotten worse. For whatever reason I have a migrating pain/stiffness thing going on...one day it's knees, next ankles, next fingers, then maybe an elbow...not sticking anywhere long probably due to the Pred.

    I'm seeing Dr Villa-Forte up in Cleveland. I know that most of the official diagnosis comes after a biopsy...but not sure if they'd biopsy trachea tomorrow or if they do that at all. My trachea is the one area I can pretty conclusively say it's affecting with thickening. I suspect my sinuses too, but not 100% sure as the ENT doc says they really look ok, but I do have an XRay that showed what they thought was a cyst and thickening. My sinuses have been burning a bit, but nothing severe like others seem to be experiencing.

    Sorry just nervous...hoping everything comes out good an makes the trip up worth it.

  4. #24
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    That migrating pain you're describing is called migratory polyarthralgia and is common with many autoimmune diseases. That's the only symptom I had of Wegs for almost a year before dx.

    I'd be surprised if you didn't have Wegs-- you have so many signs and symptoms, in classic areas too. Please don't worry-- Dr Villa-Forte is a skilled vasculitis specialist who will be able to dx you quickly. The trip will definitely be worth it. Spend some time today making notes about all your symptoms. Don't leave anything out, even if you think it's probably nothing, or if you think it's just due to the pred. A large part of a Wegs dx is based on symptoms.

  5. #25
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    Sangye right and a skilled clinician is not going to be 'afraid' of making the dx based on overwhelming clinic symptoms plus bloodwork.

    The only reason I would be doubtful of a biopsy of the trachea is that getting real material is somewhat hit or miss (my understanding is that a much better site is the kidney) and you'd need to be prepped for surgery (e.g. not eating after midnight, making sure that they knew your medical history, etc.) beforehand because you'd have to go under anesthesia, I'm assuming.

    One of the worst hours of my life was the hour before I saw Dr. Lebovics, (ENT, WG specialist) so I know exactly what you are going through. He immediately put me at ease, and I'm sure all of these guys are like that. We are very special to them both because they know how awful this disease can be and they are just generally compassionate people and also from a purely self-interested view there are not that many of us to study from a research standpoint. There's a reason why a case of suspected wegeners sees Dr. L in less than 24 hours!

  6. #26
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    Thanks Makes me feel a bit better. It's weird part of me would love to hear I don't have some thing this serious, but the other part of me thinks it's crazy because not knowing for sure is driving me bonkers.

    I really don't know that they'd check my kidneys as that's one thing where my bloodwork has been 100% normal so far. So at least I'm pretty sure I don't have kidney involvement. My whole situation started in my chest so I could see some lung involvement, but at this point the cough is 100% in my trachea I think.

    I did do a big list of all the symptoms I've been able to think of and the questions I have so far. It's almost difficult to come up with all the symptoms I've had as they seem so unrelated at times.

  7. #27
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    The only time a kidney biopsy is useful is if there is kidney involvement. Otherwise it would show no sign of Wegs--completely healthy kidney. With Wegs they have to biopsy a site where there is active disease. In general, biopsies of the upper respiratory area are the least reliable (if negative) due to the small tissue sample.

    Even without my skin lesion biopsy, they would have dx'ed me with Wegs. I suspect that may be the case with you, too, Psyborg.

  8. #28
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    Quote Originally Posted by Psyborg View Post
    It's almost difficult to come up with all the symptoms I've had as they seem so unrelated at times.
    Don't worry about putting the puzzle together--that's their job. Your job is to bring the box of pieces.

  9. #29
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    I'm sorry psy, I should have been clearer. I just meant that it is generally easier to obtain a sample from the kidneys -- obviously, if there is no involvement there they wouldn't biopsy it.

    They took all the could from my trachea and subglottis, but, alas, nada in terms of granulomas. I'm sure since they will do this surgery again (maybe several times) they will try again, but no one is hopeful. The prognosis for getting something from the sinuses is worse.

  10. #30
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    No problem Jan...just misunderstood you

    I have a feeling I'll need a surgery on the trachea soon. I can feel it getting more constricted even with the Pred...which make sense as it's not treating the cause here I suppose. It's disturbing to feel like my airway is trying to close off when I lie down on my back or start breathing hard with exercise...though I've backed off the exercise until I can talk to the Doctors first.

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