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    Lightbulb Originally Posted in Newbies...

    But seeing that is should have been the place, reposting here:
    Hello out there! I'm new...and here to divulge and vent. Hopefully the rage will pass soon...

    Where to start? Sorry if this is very long...

    I'm 35, a single-mom of a very active 10-year-old. And I used to sing. I had trained classically for close to 20 years...life was great...up till recently.

    I've lived my life mostly healthy. I've generally been fit. Was thin up till pregancy and then gained fifty pounds or so. Never did drugs. Never smoked. Rarely took pills for headaches or any sort of pain. I always fought illness. Rarely took antibiotics. Tried to let my body do all the work it needed to. Did a summer juice cleanse two years ago - lost the excess weight. And then the problems started that winter.

    It was gradual...I thought I was imagining it, in hindsight, but there was definitely gradual stenosis of my lower trachea. Or maybe it was a case of denial. I refused to believe something major could be wrong. It was barely noticeable up till December 2013, when I was hit with a horrible bout of bronchitis. My trachea never recovered and the inflammation never went away all the way. Again I thought I was imagining it all...because it didn't really affect much. I was able to adjust - but in the summer following, it regressed further (the inflammation progresses, rather).

    Over the course of the following two to three months (September, October, November), it got so bad that I could barely breathe, and dropping my daughter off at the end of our driveway made me gasp for air. This is when I realized something was horribly wrong...It was furstrating, and an emotional roller-coaster ride...to no longer be in control over your own body...I would intermittently research and what I saw scared the crap out me. I still refused to be believe THIS was happening to me.

    One morning, I ended up going to EMERG, and was tested for Asthma, but didn't experience any sort of relief in response to Ventolin. It wasn't Asthmatic. The doctor at the EMERG proceeded to refer me to an ENT for the following day, and handed me a 50g pill of prednisone to get me started (to take the edge off?). The next day, ENT looked down, and found webbing with visible stenosis just beyond my chords...I was officially prescribed prednisone, 10mg for 18 days to tide me over. He requested to have me tested for P-ANCA antibodies. I was then referred to the hospital at downtown Toronto, to a Head & Neck surgeon. It was about a month later, I had a CT done, and the follow-up appointment with the Surgeon and I saw the CT Scan results with my own eyes that the airway was restricted by half. I could see what I was feeling...well, no wonder. The potential diagnosis went from Idiopathic Sublottic Stenosis to potential Wegener's within a span of a few minutes. P-ANCA results came back negative...but he wanted to redo for both C and P. By the end of this appointment, they determined that I needed urgent help to breathe so I was scheduled the weekend following (Sunday night admittance) to have the dilatation done. This was a week short of Christmas. It was somewhat a traumatic experience...but felt normal right after waking up. Oh, I was high as a kite, but great. I had never taken drugs (to see colourful things) so you could imagine how low my threshold was for T3s.

    I was in hospital for 3 days, awaiting the procedure...and was out the day after it was done. Before leaving the hospital, had blood take to test for everything but mostly P-ANCA as well as C-ANCA. Was prescribed prednisone, starting at 50mg, tapering (till the end of December. I was able to consume some sparkling wine for New Year's, two days after finishing!).

    On my mid-January follow-up, was told that the second test for ANCA was negative, and the biopsy showed no evidence of WG/GPA, but then was told that it didn't rule it out. My happy mood was barely affected, until they stuck the camera down again, and said the inflammation was back at 10%...it was coming back!! I wasn't feeling it yet...but depression hit. I started researching again...it's sort of become an obsession. It has totally hijacked my psyche. And I'm always on the verge of tears. I have now been referred to another specialist: A Rheumatalogist at another hospital. My appointment is the 11th of March...not quite sure what to expect...I'd appreciate stories of this experience.

    By the end of January, full-blown allergy symptoms were back and my throat became tighter. I'm now back to breathlessness from a simple stroll from my car to my office (especially from cool air to warm - that is the WORST), and had an emergency appointment to determine how bad it is. They prescribed prednisone to tide me over till my rheumy appointment.

    Latest Update: I've been prescribed 60g of prednisone, tapering over a 24 day period. I'm on the second day of the regime and feeling very loopy. The meds run out the day I leave for an out of country vacation to somewhere warm and sandy (I'm in Canada...no further comment on this)...and that will be after my 11th of March appointment. Hopefully some light will be shed of a resolution. I want to get on with my life...

    Can anyone here relate to any of this, in this order?

    If you've come this far, thanks for reading my novel. ^

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    Welcome to the forum. That's quite a story!


    Two weeks in this circumstances is a long period of time to wait for the appointment with the reumatologist.
    I can understand that you want to know what 's going on, and why you have trouble breathing.
    Must be very hard when you are a trained classical singer.
    You said your ANCA was negative, I hope other forum members will have some advice for you.
    Living with WG/GPA since june 2010...

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    They will most likely evaluate you more trying to pin down the diagnosis. If they conclude it to be Wegs (GPA) most likely they will start some drugs to suppress the immune system to try stop the Weg activity. Usually CTX and RTX are used for more serious case. Milder cases might get MTX or AZA to try knock the Wegs activity. If the stenosis persists more surgical intervention is likely needed and some people have this done several times on an on going basis to try reduce the blockage. The other concern would be if the Wegs attacks some other organ and then how to get aggressive treatment before it does more damage. A doctor with experience in treating Wegs is very important if it turns out to be GPA.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Welcome to the forum! I'm sorry you had a reason to find us. Everyone's story is a little different. And it was OK for you to post in the newbies section or here... your choice. Prednisone makes some people emotionally hair-trigger, which could partly explain your being on the verge of tears. Any depression you are feeling is understandable. The stenosis is the scariest part of your story for me, as I don't have it, but could get it; some of us have it and many don't, and there are those who have it without having WG. There is a Facebook group for Idiopathic Tracheal Stenosis, if you don't already know that. In any case, of course the most important thing here is getting you a diagnosis, whether it is WG, another type of vasculitis, or something else. Best of luck in getting this accomplished so you can begin proper treatment. Please keep us updated.
    Anne, dx'ed April 2011

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    Hi Brilliantlight,
    Really sorry that you have this and you don't have a diagnosis, yet.
    I don't know if this will help you, but it discusses many reasons for stenosis.
    If you can handle the complicated literature, here it is
    http://www.pjcm.net/pdf_v18_n1_a6.pdf

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    Thank you mrtmeo. This really did help. I've skimmed it but will definitely read it more thoroughly soon. Another thank you: I was also referred to an awesome YouTube video link by Swb21188 that you had posted in July of last year: http://www.wegeners-granulomatosis.c...-stenosis.html - this was amazingly eye-opening. It sort of helped with dealing...I watched it twice just to get all of the details. It gives one hope for more than a hopeless future.

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    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.

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    Thanks for the message chrisTIn@. I appreciate the support

    Truth be told, a part of me has kissed singing goodbye...or at least I'm beginning to. Not sure how I'll be able to recover well enough to actually function in singing properly.

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    Thanks for the feedback drz. Actually, I don't know what to make of this. Everything I've ever read about Wegener's speaks of symptoms I don't and have never had. I do have allergy like symptoms...and that's it with clear mucous. Now that I'm on the prednisone, I'm not feeling that...hopefully they'll pin the correct diagnosis...It's been a bit more than 6 months with these symptoms (minus the time after the procedure)...I really, really hate living in the grey area.

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    Quote Originally Posted by BrilliantLight View Post
    Thanks for the feedback drz. Actually, I don't know what to make of this. Everything I've ever read about Wegener's speaks of symptoms I don't and have never had. I do have allergy like symptoms...and that's it with clear mucous. Now that I'm on the prednisone, I'm not feeling that...hopefully they'll pin the correct diagnosis...It's been a bit more than 6 months with these symptoms (minus the time after the procedure)...I really, really hate living in the grey area.
    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.
    Knowledge is power! Wisdom is using it to make good decisions!

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