I was officially diagnosed today with GPA

[Susan55]

Had my appointment today with a rheumy..after all the bad reviews I have read I was so nervous to go.

SHE WAS GREAT and yes she has treated many patients with GPA. I was in her office for over 2 yrs with my brother. After her asking hundreds of questions, full exam and looking back at all my testing etc. Yes, I do have GPA. She is doing more blood work (I will do it tomorrow) and also a CT Scan of the lungs. She said my lungs don't sound good at all. Once she gets all the results back, she will call me and discuss the treatment I will be on etc etc.

So, that's were I am at right now. It doesn't feel real at all! Denial I think. She also said when I had GBS last June , it was NOT GBS it was GPA and she will be contacting the neuro doctor who treated me. She was very very upset when she saw just how many times I had done to the doctor and no one was listening to me...I really really like this doctor and believe I am in good hands. She has already called me at home to ask more questions and see how I was doing, which made me feel so good.
AND, having my brother there to hear it all (as he also at times would say it was just anxiety) lol ya right

Anyways, I just wanted to share that yes I do have GPA and look forward to this group for support and learn as much as I can about the disease.

Thank you everyone

Sue

[Pete]

I guess we can officially welcome you to "the club" now. Finding a doc who knows wegs and is willing to listen is excellent news. Hope she can find treatments for you that are effective and have minimal side effects.

[Susan55]

Thank you Pete. The Rheumy has order more blood work and my PR3-ANCA has gotten higher and so many other things out of wack. She said she would call me once all blood work is complete.
Yes, I am hoping I do well with treatment. I'm still in denial a bit. One min it all feels real and then I tell my self, no the dr's are wrong. I am bouncing back and forward with these emotions ...Still haven't heard yet for CT Scan, hoping it's for today or tomorrow..

[LisaT]

I think it will take a long time to really accept. I think we go through a grieving process after receiving the news. I'm still sometimes in denial. I'll have a good day and think, nah, I'm okay, maybe I don't have it! Then reality always comes back. It is good to have hope and think we can get better. I'm still trying to balance that with acceptance, patience, and having reasonable expectations of myself. Let me know if you find the secret formula. The members on here who have managed the disease for many years seem to have a good handle on finding that balance. I hope to get there. You will too, but first allow yourself time to let it sink in and process all the emotions and accept the change in your life. I hope you get treatment and start to feel better very soon.

[Susan55]

You worded it so well. No, it doesn't feel real to me yet. When I went for my walk yesterday and then the tears just started and thinking wow I have GPA. Then the next minute I am in a daze and can't remember what stores I just passed etc. I'm everywhere mentally with emotions right now. Trying my best to be positive and strong.

I hope I find that secret formula and if I do I will let you know. When I read the stories of how some members have battled this for years makes me smile, the inner strength and just so positive. So, I just keep reading the stories over and over to help me go that one more hour in the day.

Yes, I have to let my self process all the emotions and accept it..BUT I am blocking it all out/making my self numb. I started to journal yesterday and hoping this will help me in accepting it and moving forward.
I just want to start treatment so bad, but also scared at the same time.
Today is a new day and keep smiling and enjoying all the little things in life

[MikeG-2012]

Sue:

Sounds like you are probably in good hands. The personal touch of calling you at home--nice!

If your lungs have any issues, you will probably get boatloads of prednisone--at least that is what I had to do. If you do, a great book to read is "Coping with Prednisone". It is written by sisters; one is an interstatial lung disease patient, and the other is a pediatrician. It is a good read and explains all the crazy things that happen when on pred.

Good that you brought your brother so the two of you can remember the whole visit. It helped me when first diagnosed to write down all of my questions and answers. Kept them in a binder to go back to them later. My Rheumy even wrote answers to my questions on my sheet for me. Sometimes he even wrote something funny/sarcastic in it to see if I actually read his notes later. (-8

Now that you have a definitive diagnosis, it is time to start getting treated and start getting better!!!

Keep up the positive vibes, that helps immensely!

[Alysia]

. If you do, a great book to read is "Coping with Prednisone". It is written by sisters; one is an interstatial lung disease patient, and the other is a pediatrician. It is a good read and explains all the crazy things that happen when on pred.

Is it this one ?

https://www.amazon.com/gp/aw/d/B00CK...=UTF8&qid=&sr=

[Pete]

Is it this one ?

https://www.amazon.com/gp/aw/d/B00CK...=UTF8&qid=&sr=

Yes. That's the one!!

[Jaha]

Sue, I am glad you are getting started on treatment, so you can get better soon. Welcome to the most informative group out there. Please take care of yourself.

[Susan55]

Hi Jaha

I am so happy I am here in this group, feeling blessed as my grand daughter would say . I'm ready let's start this treatment