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  1. #11
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    I have a tracheal stenosis. It lays very close to my vocal chords and i lose my voice when it flares. The fact that urs was better after surgery and returned, sounds much like mine. My wegeners is usually at one spot at a time. It started as sinus stuff n went to joint pain. My last bout was the stenosis. I too, loved to sing. Was always a dream altho i never had training beyond grade school. If u have any questions dont hesitate!

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    Can't get to post 11. Is this thread having problems? Turned out there was no 11 even though it was indicated at the top and this is now it.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Quote Originally Posted by BrilliantLight View Post
    Initial diagnosis was heading toward Idiopathic Stenosis, but then for some reason they changed their minds. My fear is that they want it to Wegener's for the sake of solving the issue. It's harder to deal with if it's idiopathic because then they don't know what caused it. I don't want a diagnosis pinned to my person without enough evidence...although I don't know if there is such thing as "enough". I've come to accept that if I have Wegener's then I have it. I just don't want to get misdiagnosed. I have no symptoms except allergy-like...besides the stenosis, that is. No nosebleeds. No pus in mucous. No blood. I'm so stumped. I think they are too. Each time I've seen them they say, "Yes, we still believe it's Wegener's." Even though I don't actually ask them, "Are you sure I have that?" It's like they're more trying to convince themselves.

    Ah well. In any case, your message is really appreciated.
    I sure pray it isn't weg's, but that what ever it is will be treatable.
    At least with weg's, they have proven treatments.
    With weg's and MPA, the kidneys and lungs are usually involved and they do a biopsy to determine it.
    Lung biopsies are not always conclusive, but kidney biopsies usually are a better choice.
    With weg's, there can be granulomas, but not with MPA.

    I am assuming if you had active inflammation in the trachia, they would have used a topical steroid in the trachia?
    Did they test your immunoglobulin levels?
    If you haven't seen this video, it explains treatments for subglottic stenosis.
    http://www.wegeners-granulomatosis.c...-stenosis.html
    Last edited by mrtmeo; 02-28-2015 at 01:55 AM.

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    Quote Originally Posted by drz View Post
    Some of the early symptoms like nasal crusting and joint pain can last months (mine lasted 2-3 years) before Wegs progresses to some thing more serious enough to eventually get diagnosed. I had ear infections, sinus infections. and was treated for allergies for many years (decades) before I developed Wegs or knew I had Wegs. These symptoms often precede Wegs and might some how contribute to its development years or decades later but how is still very unknown.
    This is what happened to me, though not for as long as drz... 2.5 years of ear and sinus and allergy-like issues. I was even tested and found to be allergic to a lot of things and took allergy shots for awhile. Things came to a head when Wegs went into my lungs and it was serious enough to get me diagnosed and treated. Not that I still might not be allergic to all those things, but Wegs was hiding in the background, and once I was treated, the meds suppressed the allergic reactions to some extent, too. I still feel like I have some seasonal allergies, though, and if I ever go off Wegs meds, may have to deal with that a little more.
    Anne, dx'ed April 2011

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    Hello,

    First of all, thank you all to those that replied. I appreciate the support and the amazing resource function of this forum.

    I'm just writing to provide an update on my very first Rheumy appointment that took place this week on Wednesday. The visit was completely stress-free and I was made to feel very comfortable. I completed a written survey of how I'm feeling, and then answered a slew of questions about symptoms.

    So it turns out, that they can’t conclusively diagnose me for Wegener’s because my symptoms are so limited. And from before, all blood tests for white cell, red cell, etc. came back perfectly in the middle of the ranges. ANCA is still negative.

    Now I’ve been referred for some more blood/urine tests, as well as a wider CT for lungs and sinuses. They said that likely the results will be coming back normal, under the circumstances, but they want to rule out other areas of potential involvement at this point… I was offered a choice of being medicated or not. My stenosis has improved from the prednisone, and they said that likely I'll be needed another dilatation but this time get steroid injections into the inflammation...and see what comes from it...

    As for actually getting tested now, they recommended I wait till I’m off the prednisone for the most accurate results. Today was my last day on the Prednisone (10mg), and I’ll be leaving for my island vacation a week from today…I’ve been provided a newer prescription by the Rheumy for another session of Prednisone just in case to take with me…but hopefully when I come back I’ll be able to schedule all of the tests for the next (unscheduled) Rheumy appointment in 6-8 weeks. I'm sort of dreading what will happen in a few weeks when the full effects of the prednisone will have worn off.

    And so this nightmare of an adventure continues...

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    Thanks for the update, Brilliant Light. I'm glad things don't look too bad for you right now, although dealing with stenosis would be a scary thing I haven't experienced. Enjoy your vacation and let us know how things go in the near future.
    Anne, dx'ed April 2011

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    I ditto Anne's thoughts, and sincerely wish you a WONDERFUL TRIP.
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    Quote Originally Posted by annekat View Post
    Thanks for the update, Brilliant Light. I'm glad things don't look too bad for you right now, although dealing with stenosis would be a scary thing I haven't experienced. Enjoy your vacation and let us know how things go in the near future.
    You're absolutely right. Things aren't that bad. Thank you for the words of encouragement.

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    Quote Originally Posted by MikeG-2012 View Post
    I ditto Anne's thoughts, and sincerely wish you a WONDERFUL TRIP.
    Thank you, MikeG-2012. You guys and this site are very much appreciated.

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    Quote Originally Posted by im so blessed View Post
    I have a tracheal stenosis. It lays very close to my vocal chords and i lose my voice when it flares. The fact that urs was better after surgery and returned, sounds much like mine. My wegeners is usually at one spot at a time. It started as sinus stuff n went to joint pain. My last bout was the stenosis. I too, loved to sing. Was always a dream altho i never had training beyond grade school. If u have any questions dont hesitate!
    Wow, same situation here, with the voice being affected (the inflammation so close to the voice box.) That's actually the reason they can't do re-sectioning - because it's too close to the cords. Now that I think about it, I wouldn't do it anyway, because 1) if they don't know what caused it, how the hell can they guarantee it won't come back AFTER and then what? 2) I worked almost two decades on this voice. To lose it would be devastating 3) the complications that arise from that procedure are so life-altering - don't think I can ever be mentally prepared well enough for that...

    I've been singing since I was 17. That's half my life...of singing. What I noticed was that my high notes are gone now. I can't seem to breathe fast enough or push hard enough to get higher notes. Used to high E, F, and G. Sing classical stuff like Mozart... now I'm singing pop, and gasping. It was always a dream to sing and I can't live without it. So I'm still hoping there will be times after dilatation I can do this like I used to a few years ago. Thanks for the message - I appreciate it.

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