User Tag List

Likes Likes:  0
Results 1 to 3 of 3

Thread: Newly Diagnosed

  1. #1
    Join Date
    Mar 2017
    Posts
    1
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Question Newly Diagnosed

    Hello Everyone! My journey began 3 years ago when I had severe sinus issues , swollen lymphnodes, and a rash on my leg. Unfortunately, no one put it together. They sent me to a reheumatologist who was horrible, and tried to sell me vitamins. I had pretty much been on steroids for 2 years, so I was feeling better and the symptoms were at bay. Move forward a year and I started getting the rash again. I went to a dermatologist and she sent a biopsy off which showed psoriasis. So, I am thinking my sinuses and Psoriasis aren't related. I am using cream and the leg rash starts getting pustules. I go back and my dermatologist says it is a weird presentation, but maybe it is infected. They do a culture. I start thinking this is not right. In a week my pustules opened up and it is very painful. I decided to call a different Rheumatologist and I brought all my old tests and biopsy results from my lymphnodes. I have a saddle nose that I thought was from wiping my nose soooo much. She said no, and you don't have psoriasis. I am pretty sure you have wegener's. How did they miss this she said. Your lymphnodes biopsy clearly shows a glomerular disease. Now, I am waiting 2 weeks to go back for a treatment plan and my leg is getting worse. I was looking for threads on this, but I haven't found any on here. Just curious if anyone's skin was affected by this disease. At what point do I not wait. She showed me pictures where the skin starts necrotizing. Thankfully, I am not there yet. She is waiting on a couple of labs to create my treatment. Just looking for how to control it in the meantime? I am very thankful to have found this thread as I am a newby and don't know much.

  2. #2
    Join Date
    Jul 2010
    Location
    see map location in MN
    Posts
    4,374
    Post Thanks / Like
    Mentioned
    16 Post(s)
    Tagged
    0 Thread(s)

    Default

    Sorry you need to be here but glad you found us.
    Knowledge is power! Wisdom is using it to make good decisions!

  3. #3
    Join Date
    Oct 2011
    Location
    near Phx, AZ
    Posts
    1,809
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome Nixie, this is the place to be for comfort, understanding, and experiential info. Having skin issues seems common in WG. I had blotches on my arms & legs...all went away with proper meds & protocols. Best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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
  •