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Thread: Flare up??

  1. #11
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    Gwenllian, please see someone else straight away - I don't think this can wait until Tuesday! Another classic case of a doctor with no Wegs knowledge.

    I'm sure I wouldn't regret my decision either, it's hard when I being forced to make it 5 years before I thought I would need to.

  2. #12
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    Gwenllian, I'm so sorry you got such an idiot for a doctor. She didn't even do basic blood work or a urinalysis??

    I hate to say it, but you need to get to a proper hospital and get checked out. I know you must be completely exhausted. Please just muster up any shred of energy and go. You would do that for your children, right? Do it for their mother! In case you get an ER doc who also doesn't have any sense, then demand basic tests (urinalysis, CBC, Blood chemistry, Sed Rate, CRP). There are times you can let things slide a few days and times you cannot.

  3. #13
    Doug Guest

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    Gwenllian-

    Your experience pisses me off so bad....!

    That doctor WAS an idiot! I hope you read this after you followed the advice of Luce and Sangye because a pregnant woman going into renal collapse because a doctor can't see the issues staring her in the face is just too much to tolerate!

    And, yes! Demand the blood work and the urine analysis. You have a human right to proper health care! plus one.

    (Also, get your husband to read this forum so he understands how serious your medical issues are at this point.)
    Last edited by Doug; 08-30-2009 at 05:57 AM.

  4. #14
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    Gwenllian, I cannot tell you how mad I am right now for what you are going through. It is so scary that they cannot see the fear and pain that you are in. Telling you to wait to see your family doctor??? Maybe the doctor should have spent a little time doing research to see what they are dealing with and not just brush it off. I hope you get the proper care ASAP.

  5. #15
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    I hope you have gone to a different doctor by now, or to the hospital. You need to keep your health to care for your children. Sometime you have to just insist. I didn't, but my daughter did to my endless gratitude. I hope for all the best for you. I have also learned it is inportant to be assertive when you need to be. Maybe with your husband too when you need help. Germaine

  6. #16
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    Gwenllian, I hope by now you have seen your doc and are on the way to recovery. I'm not surprised by the total lack of knowledge, however I am absolutely horrified by the lack of decency and common sense when told you have Weg's. When you are feeling up to it I would write a strong letter about what happened to you. It is inexcusable and both the doc and the medical board of your state should know about it, not as a rant but a learning tool to help prevent future mistakes.
    Jolanta

  7. #17
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    Also, on a happy note my best wishes to you and your family.
    Jolanta

  8. #18
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    Thanks for all your lovely replies.

    After seeing that awful GP, I took myself to the ER. Luckily for me that I did, as I was indeed having a flare up. It was complicated though, after some tests, it was found that there was some extra 'growth' detected (probably granuloma) where my tracheal stenosis is, which has started to extend into my esophagus making swollowing and eating very very painful. I was also having flu like symptoms, swollen joints, etc, and feeling pretty low by that point. Luckily, my rheumatology consultant found me and has sorted me out, and let me home over the weekend, only to go back in on Monday to start Ritixumab treatment again which should hopefully get me back on track again.

    Thank you so much for all your replies and support, it really brings things back home to me and I don't know what i'd do without the support of this forum. xx
    Wegeners Granulomatosis diagnosed May 1995. Tracheal Stenosis since 2000.

    Proud mum of 3 beautiful girls, post cyclophosphamide (so it really can happen!) xxx

  9. #19
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    I am so glad that everything is working out for you. I wish you and your family the best and hope you are on the road to recovery. Just remember, and I know it is hard with a family especially with such young children, but you MUST be selfish and think of yourself first. Take the time you need to rest and get better. You need to be proactive with your health which I learned the hard way.

  10. #20
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    SO glad to hear from you! I was worried.... My doc is trying to get me on ritux, too, as the ctx isn't cutting it. I'll have to pick your brains about ritux, since I don't know much about the schedule, side effects, etc...

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