ESOPHAGEAL CANCER COMMUNITY
eosinophilic esophagitis

eosinophilic esophagitis

I was recently given a dx of eosinophilic esophagitis - after an ER visit and a visit with a GI doing a EGD with biopsy.  My problem is a tried the Flovent and had increased symptoms to which the GI and Primary thought was a reaction.  So I was taken off.  My primary MD looked directly at me and said due to my other med allergies codeine and penicillin he, "Really didn't know how to help [me]." Yet he gave me Oxycodone for x2/daily for 4 days to help ease the pain.  He stated he was going to visit with the GI; however, when I called Monday to report it really was no better excepted reduced night coughing, he requested I come in for an x-ray.  It was a chest x-ray to which he informed me everything looked good and that he thought it was "just a tough virus," so I reminded him about the Flovent . . . in any case I called the GI office myself and got a call back today hoping the GI would call the Mayo in MN (as I informed them I scheduled an appt) to discuss or visit with my primary about things so he knew my case history.  Anyway, the nurse reports that the GI doctor states that Mayo won't do anything more for me than what he's already doing and the GI was suggesting a course of cortisone.  My experience with "a course of corisone" has been more along the lines of a doctor doing it when they don't know what else to do and then what ever is happening comes back.  If I keep the Mayo appointment I have to juggle family and time off work, so my husband suggested another primary MD I've seen in the past to get his view.  I'm feeling like I'm running in circles and no one knows much about this disease and yet I cannot understand why a doctor would discourage someone from going to Mayo with making a call to GI there to maybe see of other options or suggestions.  The nurse was going to provide additional info to the GI on my hx - GI is back int he office next week.  Feeling lost, getting upset, frustrated daily I have additional symptoms as I now get nasuea with food followed by burps and sometimes big ones that feel like something is going to come up. And I'm eating soft foods mainly and losing weight.  Is another MD the answer or other treatments? My apprecaite for any help - as I have tried the different sites and look into research as well on food allergies, but I have none.
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I should also mention that I do have GERD.
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