I cannot tell you how happy I was to stumble upon this group while researching various treatment options and trying to understand what this diagnosis is and means. Your positive and supportive spirit on the threads lifted me up when I was feeling frightened and overwhelmed.

My mother has been deteriorating over the past year. Her RA getting worse and worse. Even being sent home from her job in a shipping receiving plant. She is 62 (and a smoker). Since February she has developed numbness in her left leg, and a sort of tingling sensation. I flew back for her mothers funeral and I couldn't believe how she shuffled, the pain she was in, and how she hadn't slept because of it. When her RA Dr. sent her for a chest CT I knew something was up. I was afraid it was cancer. The next two weeks became a whirlwind. My moms CT shows that she had pulmonary lesions (cavities). Chunks of lung gone! Still afraid is was cancer, we didn't understand why we were being sent next to a Kidney Dr. (good news is. That day was my mothers last cigarette!)

I got a call from her pulmonary Dr. telling me about Wegeners. He was positive that was it and the Kidney biopsy would confirm it. The more I researched, the more the Kidney Dr. spoke... the more I tried to understand this strange disease. He called it a medical Zebra. Every symptom leads one to think horses... typical. But this diagnosis is the Zebra, the unusual, the not expected.

My mother had the biopsy, she's also had a bronchoscopy with bronchial lavage, and a lower back CT (which came out clear). It's been two weeks since all those tests and even now on 50mg of prednizone a day, apo-hydroxyquine 200mg (since 2013), pmg-gabapentin 300mg, a day... the Tylenol #3 for pain. which sometimes works, but not really since she is still shuffling and having a hard time sleeping.
The leg numbness is what's really driving her nuts. Has anyone had a similar experience and what advice do you have about treating or managing with it?

The Drs have asked me to make sure I understand the course of treatment and to do my research. Which is how I found this site and the wealth of information. This week I'll be FaceTimed into her dr. appointments. and the hope is that treatment will begin next week.
Thank you for this group. Thank you for your posts.