I was diagnosed with Wegener's over 2 years ago. I feel like I have been to hell and back with this. I am sure most of you can relate. I had 9 months of IV chemo which made me so sick (rutaxin and Cytoxan) that I had to have a back fusion because I blew two discs in my back from the nausea. I am recovering from back surgery that was last October. I had to have an emergency surgery 5 weeks later because the incision wouldn't heal.. and got infected. I am trying to maintain my job, and etc. I am having some new symptoms and I want to know if anyone else has had any of these. The Wegener's is in my head and seems to be attacking my eyes mostly. The pain is unreal at times. I am losing the feeling on the right side of my face off an on. (this happened when I was first diagnosed) And Saturday my left leg started doing some crazy stuff. It felt like my leg was being shocked by electricity. The pain was almost more than I could bear. I finally took enough pain killers to knock myself out. I called my doctor, and he cant see me until March 19th. We don't have many doctors to choose from here. He is only one of two RA docs in town. Today the same symptoms came back in my leg. About 30 minutes ago, I stood up and my left leg gave out on me and I fell flat. I haven't done that since the back problems. I am scared and I don't really know what to do. Can someone recommend someone or something to help me? I am single, and have no family here. So any suggestions would be helpful. Also, about 3 weeks ago, I woke up and my left eye was completely blood shot with horrific pain. I ended up in the ER because the pain was way beyond my management. I called my ophthalmologist, and he said he read my ER notes and he didn't think it was much to worry about. I have never had that happen to me before. I am on azathioprine, steroids, humera for RA.
Thank you for taking the time to read this, and for any replies. God Bless. If I didn't have my faith, I don't know what I would do.
The Alaskan Girl
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