
Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

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Hi. I was just diagnosed with churg-stauss syndrome. It's a "type of lupus" in the blood vessels, and is EXTREMELY rare. I will be seeing the rheumotologist for the 1st time next week. (I have to drive two hours to a bigger city to find a doctor familiar with this disease)
Does anybody else have this diagnosis? And what do I expect when I go to the doctor? I'm trying to be brave & not scared, but truth is, I almost died this last bout... I was in the hospital 13 days, and finally when they started the prednisone it started to clear up. But without it between the fevers, the pain, and the bowel obstruction and pneumonia that resulted, I was not in good shape. I just feel I'm too young for this! What did I do to deserve this? Please any advice &/or new friendships that I can get, I'd sooo appreciate it. I'm really in the dark here, despite all my google searching! Thanks. LimaBean
Does anybody else have this diagnosis? And what do I expect when I go to the doctor? I'm trying to be brave & not scared, but truth is, I almost died this last bout... I was in the hospital 13 days, and finally when they started the prednisone it started to clear up. But without it between the fevers, the pain, and the bowel obstruction and pneumonia that resulted, I was not in good shape. I just feel I'm too young for this! What did I do to deserve this? Please any advice &/or new friendships that I can get, I'd sooo appreciate it. I'm really in the dark here, despite all my google searching! Thanks. LimaBean
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Do you have asthma? That seems to a bid indicator of this desease.
Make a list of all your questions and take it with you to the doctor. Make them give you answers you can understand,that is thier job.Be sure to ask about the prognosis and the things that concer you the most.
Remember you are the boss, they have to work with you. Always tell your doctor the truth even when it isn't something you like. They a legally bound to keep anything you say confidential, but the more correct info you give the better they can help you.
Even if you were 100 yrs old you would be to young for this.No one deserves it and your fears are normal. Wish I could help you more.Good luck.......Deb