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Thread: It started in 2010

  1. #1
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    Default It started in 2010

    Hi everyone, I'm Zoe

    I was diagnosed with Wegener's in 2010 in September but I had been sick from about June of that year.
    I was 15 at the time, I had always done well at school, been involved in sport and cultural activities and had a great group of really close friends. This happened to be the time of year when I had a few things going at once: the school production, choir competition, sports practices, and school work.
    It was getting near the end of term two and I really needed a holiday, I was exhausted and coming down with a cold. A week into my two week holiday break I still wasn't getting better in fact I was getting pretty sick. My mum and I went to the doctors and I was told that I had an ear infection caused by sinusitis (not surprising as my dad suffered from sinusitis too) so I went on my first of about 4 different lots of antibiotics.
    I was determined to go back to school when the next term started and I did for a time but I was just too weak and miserable so I forced to admit that I was really unwell I was breathing through my mouth at night as no air was getting through my sinuses. Still with no result of medication we went back to the GP and she scheduled an appointment with an ENT surgeon.
    She was concerned about the inflammation in my nose (she couldn't even get the camera up to look properly!) and was also worried as I had lost a lot of weight and was getting side affects such as nausea from my antibiotics. We discussed surgery for my sinuses and she sent me off home again with a small dose of Prednisone.
    Weeks went by but I didn't get better and everyone was flummoxed so they brought me into hospital for a few days to monitor me and hooked me up to an IV to administer the next antibiotic. The last morning I was there, the doctors were doing the rounds and I remember having about 6 or 7 people standing around me (mostly students) and one man in a suit. The man in the suit looked at me straight in the eyes and said that there didn't seem to be anything wrong with me and that I could go home!
    He missed out big time!!!
    The ENT surgeon that I went to see contacted me and said that she would get me to do more blood tests and try and figure out with some of her colleagues what was happening and that she would get back to me. So my mother and I left the hospital slowly as I was very weak by this time (early August- my birthday) and went home.
    I had missed a lot of school by this stage and was getting pretty depressed mum took us up to our holiday house for a week or two. We were driving back down when we got a call saying that it was urgent that I come in the following morning so we did.
    That morning was when I was officially diagnosed.
    Prednisone 35mg , Azathioprene 150mg , Calcium, vitamin D, the works. It was almost the holidays but I didn't expect to here from any of my friends from school as they hadn't made any contact for months. I was in the house too tired to go out and nowhere to go anyway, it took until the start of the new year (2011) for me to have enough energy to get back to school and it was great to have something to do.
    Everything was going well and my specialist was starting to pull me off Prednisone when I got an infection. Back onto antibiotics and back up on Pred. Specialist wanted kept me on antibiotics but kept pulling me off Pred.
    It was in November 2011 when I started to develop extreme thirst! I was drinking over eight litres a day! Long story short the Wegener's had spread to my brain through my sinuses and was messing with my posterior pituitary gland causing me to develop diabetes insipidus another extremely rare condition diagnosed in February of this year.
    So it turns out that my Wegener's was getting worse and was no longer responding to treatment. It was time for me to change to cyclophosphamide (something everyone was hesitant to do in the first place due to the problems with infertility) and my specialist applying for a government dispensation for the Rituximab (as it isn't available in New Zealand) in the mean time.
    I am at a new school now and am trying to work out what I enjoy doing now (sport still out of the equation due to lack of energy and fatigue).
    Nobody knows about my condition except my family, doctors. teachers, a few close friends and now you.
    I look forwards to getting to know you and your stories.
    Z

  2. #2
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    Zoe,
    Welcome to the greatest source of information you will ever find. I'm so sorry that you have to be afflicted by Wegs at such a young age. It will be a while before you get your energy back and will be very aggravating at times. Just hang in there and educate yourself as much as you can about this disease. I wish you all the best for early remission.
    Jana

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    Welcome to the Forum Zoe. We are just one big family here. You can feel free to ask any question or talk about anything you like. There are other members on here from New Zealand as well. It sounds like you should have had ctx (cyclophosphamide) right off the start. Most cases of Wegs need ctx right off the start.

    So what symptoms do you have now? What meds and doses are you on now?
    Phil Berggren, dx 2003

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    You`ve come to the right place! I myself do not have WG but my daughter does. I`m still fairly new to this site but everyone is extremely nice and all very welcoming. I wish you the best of luck! And if you have any questions this site is def the place you want to ask them!

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    Zoe, you have through a lot--yuck! And don't you just hate it when some pompous jerk says there is nothing wrong with you, and even saying that in front of tomorrow's doctors? The drugs we take are a mean and nasty bunch, but not taking them is profoundly worse. I wish that, in your case, they would have intervened before the vasculitis had affected the pituitary. Yet, you seem to be in a pretty good place considering what you have gone through. Thanks for sharing your story, and please let us know your progress. This forum is a good place for many kinds of support.

    Al

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    Zoe, welcome to the forum...lots of good and smart people on here to ask and share ideas with daily. Hang in there, you seem to have a good attitude...be persistent and ask questions and learn as much as you can about this disease. Not all will pertain to you and some things will frighten (they do me!! LOL), but between your youth and a supporting cast of family and doctors, you will weather the storm!

  7. #7
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    Welcome, Zoe,

    This forum is really the only positive thing I can think of about having Wegener's! So, I'm glad that if you have to have it, you found us. You will most likely find more information and support here than anywhere else on earth. And we have discussions about fun, non-Wegs-related things, too. I'm sorry your WG got to the point it did, and best of luck on the progress of your treatment. Please keep us posted on that and anything else that crosses your mind. And check out the various categories of posts in the archives, where you can really learn a lot about specific subjects.
    Anne, dx'ed April 2011

  8. #8
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    Hi Zoe and welcome ........even though I am sorry you have to be here.

    You and I were diagnosed around about the same time, but my symptoms started in July 2009, also with unresponding sinusitis.


    Take care of yourself and remember to always ..........
    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

  9. #9
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    Zoe, welcome to the Forum and to your new extended family. As Al said don't you hate pompous jerks (why do they always have wear suits?) but at least you had one doctor that believed in you and knew that there was something wrong. Don't be shy to ask any questions that you may have, and do please keep us updated on your progress with this disease.

    Jim
    You give but little when you give of your possessions. It is when you give of yourself that you truly give. Kahil Gibran

  10. #10
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    Hi Zoe, I have brain, eyes and sinus involvement. What are they doing for your brain? Do you see a neurologist? I have numerous lesions in deep white matter of brain and a large one at base of brain which if grows..well. .nothing good. Anything about brain treatment I would appreciate. Sorry, you are so young!
    Susan

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