User Tag List

Likes Likes:  0
Page 2 of 2 FirstFirst 12
Results 11 to 15 of 15

Thread: New Member from Philadephia

  1. #11
    Join Date
    Sep 2013
    Location
    Phoenixville, PA
    Posts
    40
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    XnCelt
    I first went to U of Penn and had a horrible experience. The doctor wanted to use me as a case study and follow a less normal protocol of low doses of prednisone. I kept getting sicker and my eyesight was getting worse. After 6 months I went through the ER at Will's eye and found a great doctor and am with a team of Jefferson. The doctor at Will's saw the MRI report and that the sinuses were heavily involved. Within a month I had a major sinus surgery and they found a fungus in the sinuses up in the brain. They did biopsies but because I had already been on pred it came back inconclusive. The doctors put me on Rituxan right away. The insurance company kept denying it but the doctor did it anyway, saying that if it got denied he would pay for it. The Rituxin worked great but quickly I started going down hill again. I eventually had to have my left eye and all the muscle and tissue around it removed and a growth in my brain removed. The biopsy of that material showed Necrotizing granulomas. I also had elevated ANCAs and Sed rates. I suffered from chronic sinusitis and nose bleeds.
    I'm now with a great rheumatologist Dr. Kiriackado. She takes a little to get used to but she listens very well and encourages me. She even asked if I would be willing to start a face to face support group. I have a background in social work and psychology.

    I live out by valley forge and have two teenagers and a great lazy dog named Snickers.

  2. #12
    Join Date
    Dec 2014
    Posts
    23
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I'm new too! I'm trying to navigate this chat!


    Sent from my iPhone using Tapatalk

  3. #13
    Join Date
    Sep 2013
    Location
    Phoenixville, PA
    Posts
    40
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome!! My chemo nurse said she just went to a conference and that Wegener's diagnosis is on the rise. They think it's because of better diagnosis tools.

  4. #14
    Join Date
    Dec 2013
    Location
    india
    Posts
    39
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi guys..m dr neha here frn india..I was diagnosed with wegeners back in 2006. ..nyc to see such nyc ppl out here

  5. #15
    Join Date
    Jan 2015
    Location
    Concord,NC USA
    Posts
    34
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Roger,
    Welcome and glad to hear someone is feeling well !!
    Praise is due !
    James

Page 2 of 2 FirstFirst 12

Tags for this Thread

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •