last time I posted I was frustrated because I was still not properly diagnosed...

%d comments
  • Sorry to hear this, Rachel but glad you found out and are now getting treated. What type of vasculitis do you have? What are they doing for you as far as treating your kidney failure and vasculitis?

  • (TAK) What form do you have?

  • I have not found a doc that is able to diagnose me properly. It's been almost 6 years. I now have scleritis in my eyes too. I have 2 docs that are pretty sure it's wegners but they are not rheumy's.

  • What are your obstacles to getting a rheumy or a solid diagnosis? Where do you live? How can we help?

  • well, my wound care doc is phenomenal! he wants to send me to Georgetown. The problem is that I have no active vasculit6is right now. everything is almost healed. Hershey Medical center did a biopsy where there was no vasculitis. they would not use my biopsy from 6 years ago

  • I see on your profile that you are in Hershey, PA. OK....I have a wonderful doctor for you to see in Philly. Leading vasculitis research who leads the efforts of the Vasculitis Clinical Research Consortium....Dr. Peter Merkel at the University of Pennsylvania.

  • Follow this link for info...ok! http://rarediseasesnetwork.epi.usf.edu/vcrc/center s/upenn.htm He will get it all figured out!

  • What reason did they give for your kidney failure if not the vasculitis?

  • oh no so sorry to hear that - prayers it can be reversed

  • WG/GPA I am so sorry to hear that! Sending prayers your way. Some Dr.'s are just not up to date and seem to not care. I had one Dr. tell my mom it looks like I am on cocaine because my disease was attacking the blood vessels in my sinuses. (I really thought of suing him because I have never seen cocaine except on TV but I did not) Ha Ha. Thankfully I found a Dr in Montgomery AL. his name was Dr Evans and he was able to diagnose me with WG.