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Thread: Just diagnosed - gigi.palumboshatz

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    Default Just diagnosed - gigi.palumboshatz

    I recently have been diagnosed w Wegeners . I am very scared and unsure of what this means in term of my future holds. It took months to diagnose it, but the Cleveland Clinic finally figured it out. I am on cytoxin and pred and a lot of vitamins. What should I expect ?


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    Hi Gigi and welcome.

    You can expect to have a full life. It will be a new life for you with medications and doctors appointments, but hopefully this part wont last very long and you will find remission and continue living.
    At the moment you may be enjoying the roller coaster ride that many of us are on.
    It's a fun ride with many ups and downs, highs and lows but there will also be the straight rides as well.

    One thing I will say is - please don't believe everything you read on the wide world of the web. With proper treatment, you will find that remission.

    Please take your time to start a thread in the New Members section to introduce yourself. This way, your question will be seen by many more people.
    Let us know what part is affected by WG and how you have been since starting the medication.

    I look forward to following your journey further
    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

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    Hi Gigi. Welcome to this forum. I'm sorry to hear of you being diagnosed with WG. However I'm glad they finally did get a diagnosis so now you can start to get better. I've had this disease for 34 yrs and yes I've had some really tough times but I've also had a wonderful life and career. You too will have some rough times but it's a manageable disease now more than 30 yrs ago. From what I've read on here Cleveland clinic knows WG and has all the connections and capabilities to help you. The key is a positive mindset, good doctors and take your meds as directed and life will level off for you. Hope to hear fantastic news from you soon!!!


    P.O.W.E.R. Positive ongoing waves encourage remission

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    Just moved this to the new members area so it gets more visibility

    Ignore me and carry on....
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

  5. #5
    ozterry Guest

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    Hi Gigi and welcome. As others have said, don't believe everything you read. But yes the journey is not an easy one, but this is the best home you will find. Everyone of us is here to help, so ask away and voice any concerns you might have. Take care and welcome aboard.

    Terry

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    Welcome, Gigi. You are lucky to be able to go to the Cleveland Clinic, one of the best places in the world for WG treatment. And I'm glad you found this great forum; here you will feel less alone and less afraid. Many of us were diagnosed months and years after symptoms began and are now doing quite well, as you can tell from reading many of our posts. And, yes, do not believe the scary statistics you may read on various sites. There is a lot of hope that you can get this under control and go on to lead a normal life. Keep us updated, and stay active on the forum!
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    Welcome, Gigi. You are lucky to be able to go to the Cleveland Clinic, one of the best places in the world for WG treatment. And I'm glad you found this great forum; here you will feel less alone and less afraid. Many of us were diagnosed months and years after symptoms began and are now doing quite well, as you can tell from reading many of our posts. And, yes, do not believe the scary statistics you may read on various sites. There is a lot of hope that you can get this under control and go on to lead a normal life. Keep us updated, and stay active on the forum!
    When looking back on the symptoms I think I've had this a long time. I've been reading many posts and feel a lot better about this disease. I really appreciate all the support from site! I felt so alone and now I feel I have found a whole new family ! Thank you so much! XO



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    Bear in mind that the first year after diagnosis is tough. A lot to learn and get used to. Good luck to you!
    I am a strong person, but every now and then I also need someone to take my hand & say everything will be alright....

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    Welcome Gigi. Glad you found this site. Everyone here is incredibly supportive and knowledgeable. It is tough in the beginning, but as you heal, it gets a little easier step by step. Wishing you the best in your treatment and road towards remission!

    P.S. I agree 100% with mishb, don't believe what the internet tells you. I made the mistake of Googling Wegener's after I was released from the hospital, and I was so depressed. It wasn't until my husband found this forum for me that I started to realize everything could be OK again, and I started to feel better. Stay positive. xo
    Nicole

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    Welcome GiGi
    Sorry you've had to find us but be reassured now you have you will be wrapped in love help & information on your journey !!
    It's a lot to take on board at first but this is the place to advise / support / rant as much as you need


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