View Full Version : So tired of the back and forth

04-04-2011, 02:50 PM
I have been so sick and in so much pain since I started the Cellcept that I called my rheum again and asked if maybe something else might work better. Her nurse calls back and we're back to, "there's no proof it's Lupus..." When she sees me in person, it's always an AI issue -- over the phone, suddenly I'm the mystery patient. I am going off the Cellcept. Whatever is going on, Cellcept is not helping me. I'm beginning to question if maybe this really is something else. Maybe RA as my joints have begun to swell and rarely go down. Actually, all of this is simply making me crazy!!! My appt. with the big med center team is in May. I'm going to try to take my prednisone down as far as I can and just sit tight until then. There are so many documented symptoms and I receive support from my pcp and the nurses at the hospital. I know I'm not crazy but this doctor is making me feel like some nutty faker.

I know you will all be supportive and I know most of us have gone through this. It just gets so tiresome and my pain level (as they always ask at the hospital) idles at 8. I'm talking serious, serious pain in my shoulders, neck, hip and legs. I need to go to the grocery store and would rather throw myself out a window because the bottom of my feet will hurt so bad when I get back. But...I'll chill on the drama, get the groceries and continue to pray for an answer. I really, really think they're missing something. I just hope whatever it is, they pull they're stuff together and figure it out!

04-04-2011, 03:08 PM
i am so sorry you are in so much pain and misery i wish i could change things for you. i know that sometimes you have a difficult time explaining that certain things they give you do not work.Bonita

04-04-2011, 04:21 PM
It is the pits to be told one thing by one doc and then have another one doubt it. At least, May isn't too far off. Washington U. is a top-notch medical school, so hopefully their docs will get it figured out and get you some relief.
Hang in there!
BTW, I love St. Louis in the Spring - makes me a bit homesick!