Just diagnosed - gigi.palumboshatz

[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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[mishb]

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

[daystarr8]

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

[andrew]

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

Ignore me and carry on....

[ozterry]

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

[annekat]

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!

[gigi.palumboshatz]

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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[jvilner]

Bear in mind that the first year after diagnosis is tough. A lot to learn and get used to. Good luck to you!

[NicShaf]

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

[Jayne 14]

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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[gigi.palumboshatz]

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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I have cried so much, it's actually got to the point they didn't know what was wrong and were going to put me in hospice! Lucky for me a dr sent my records to cc and a lung resection and now I'm still alive ! Whew!


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[ozterry]

Well cry no more, you are safe now here with us. I was terrified when I was first diagnosed, searched Google and got terrified even more. Found this site and now feel "normal', in a Weggie sort of way. :biggrin1:

Terry

[annekat]

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



Sent from my iPhone using Tapatalk I am so glad to hear you say how much better you feel since finding the forum! I remember being shy at first about posting and introducing myself, but it didn't take long to feel like one of the family. What a great group of people who happen to have this dumb disease!

[BookNut]

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 appreciatete 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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So glad the forum is helping you to feeling better about things. You have made the best possible decision to join this group. Welcome!

[gigi.palumboshatz]

Thank you so much! This has really put my mind at ease. It's really been a rollercoaster of emotions. I thought I only had a few years to live, based on internet info, but now I know that's not true.


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[gigi.palumboshatz]

I am so glad to hear you say how much better you feel since finding the forum! I remember being shy at first about posting and introducing myself, but it didn't take long to feel like one of the family. What a great group of people who happen to have this dumb disease!

I get so frustrated because I never have a normal day, not sure if I am noticing it more now or what,it's crazy!


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[annekat]

I get so frustrated because I never have a normal day, not sure if I am noticing it more now or what,it's crazy!


Sent from my iPhone using Tapatalk I know what you mean about not having normal days. We have what we call the "new normal", once we get the most severe stages under control with meds. But there is hope that the new normal will improve, too. After 3.5 years, I finally got a really good blood test result showing my inflammation level to be completely normal. I still have days when stress gets the better of me and symptoms creep back, especially fatigue, which may always be with us to some extent. And I'm still on meds. But overall, the best ever since dx despite some pretty stressful stuff in my life right now.

[MikeG-2012]

Thank you so much! This has really put my mind at ease. It's really been a rollercoaster of emotions. I thought I only had a few years to live, based on internet info, but now I know that's not true.

That is the problem with the internet and medical diagnosis. Don't believe all you read,

With this disease, we are all writing our own books as we go along. None of us are the same in diagnosis, symptoms, lifestyle, etc. Hang in there and let us help you with consulting for your book, and let you doctors help you co-author the book too.

[duffybear]

Thanks to all the posters on this thread. Like you Gigi, I am new to this and fairly overwhelmed and confused. It's good to read positive, hopeful remarks - thanks to all of you who have been riding this train for years and welcoming the frightened new passengers. (And Merry Christmas to all of you in the Dec. 25 time zone!)

[Jayne 14]

Merry Christmas to all too
On the crazy Wegners train however severe
Thank God for this site & everyone's advice
🎅🎄🎅🎄🎅🎄


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