Thanks, Tatia, for your suggestions!
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Originally Posted by Geode
Have you researched mast cell disorders?
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I've started looking into mast cell disorders a little most recently, but haven't come across anything that feels like an "aha" moment. I will continue to research that area though since it is new to me. Thanks for the forum link. I've found forums to sometimes be more helpful because then I can get a practical view of the illness from the perspective of someone who lives with it every day.
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Originally Posted by Geode
More importantly, have you considered applying to the NIH Undiagnosed Diseases program? You have so many different things going on, with several positive test results, I think you might make a good candidate.
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Since I live in the DC metro area, this seems like a no-brainer. I talked to one of my doctors at one point a couple of years ago (when I was in the life-threatening GI bleeding situation) and he felt it was unlikely I would be accepted. He said he had other patients sicker than I that he had not been able to get in. Since this is a doctor I have a long history with and is someone I trust, coupled with the fact that I was so devastatingly ill, I let it go. Maybe it's time to look at this possibility again. Thanks for the reminder!
Jenny