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Date Posted: 07:50:42 07/11/07 Wed
Author: Susan
Subject: Re: Help! I am SO frustrated!
In reply to: big ma 's message, "Re: Help! I am SO frustrated!" on 22:21:27 07/10/07 Tue

>same problem here and I have been dealing with endos
>all over md especially Johns Hopkins and Univ of MD
>medical center. The only other place I can think of
>is check with the nih in Bethesda MD . The keep
>checking me for adrenal tumors also because I am
>having such a hard time getting off the steroids.
>They just say I should be able to drop without the
>severity of problems let me know how you make out. I
>know I have had 2 pos 5hiaa tests for adrenal gland
>tumors but they haven't found them yet doing octeotide
>scan(sp) they say the can be really hard to find.

It sounds as if you may have carcinoid or ectopic tumor, and they can be very hard to find. :-(

Susan

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