Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Hi all. Been away for a few weeks and wanted to check in and see how everyone is doing. I haven't had access to a computer and it would take days to read the mail. I will try to catch up if I can though cuz I hate to miss posts. Hope this season is finding you all healthy and happy and ready for a new year. I went to the specialist in Ann Arbor and yes...I definately have Churg-Strauss Vasculitis says he. I will be seeing a neuro-surgeon this week for a biopsy but he said he doesn't need it to diagnose the CSV as my labs show elevated eosinophils, elevated sed rate, elevate ANA's, failed the FEV even with loads of meds, have chronic polyposis, skin is burning, and high dose prednisone is not working. So, next step is a round of meds that have a little better kick than the coticosteroids. One of my questions is has anyone else went through the low dose chemo-therapy for this disorder? Did you have side effects? How long did you take meds? (He says 6 months to a year). Were you warned about possibility of stroke? Did your CSV go into remission? Are your other organs involved? (He says my lungs and brain so far). I have been reading as much as I can and am at a place where I am worried and relieved...if that makes sense. I have been pretty sick for a long time with no answers and knew something besides fibromyalgia was wrong. Had I believed the rheumatologist and never kept questioning this, it scares me to think what could have happened without treatment options. Anyone with any info let me know what you can to enlighten me okay? Thanks all and make a good day! Trudy. Quote Link to comment Share on other sites More sharing options...
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