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late onset diagnosis CVID

late onset diagnosis CVID

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gbstarnes's picture

Greetings! Iam a 56 year old male, on IVIG for 4 yr.'s now.Started showing signs of unusual infections at 35, that never stopped, but were mis- diagnosed constantly. Had unneeded surgies, steriods and other wrong treatments-accussed of drug seeking,faking illnes:even had a doc. pat me on the back,walk me out & wish me a happy life, he found nothing wrong. Next day emergency surgergy for Fistula repair! Men are not supposed to get Fistula's, so Dr. went by," if sounds like horse, don't think Zebras! This only touches surface; Actually had so many unusual infections, UTI, Impentigo,tubes in ears, Etc. " I asked to have Immune system checked, 10 yr." before diagnosis" and told unneccessary, just in wrong place at wrong time! Took it upon myself to take all medical records to Emory Hospital in Atlanta, and a Dr. Lisa Kobrynski saved my life.           Has anyone had trouble with late onset CVID diagnosis, and troubles from it( I. E. Steriods,that I did not need , caused Adrenal Gland failure & osteoporosis,5 broke bones in 1 yr.! ) This is just tip of iceburg, would love to hear stories from anyone who had similar 20 yr.s of hell& confusion.  Awareness has been my goal, but can not even get brochures in Dr.s offices, meet with AMA chapter, or just put flyers in schools, so suggestions will be greatly appreciated.  Thank You,   Kic                                                                                                                                                                                                                                                                                                                     

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