LindaJoy Posted August 12, 2006 Report Share Posted August 12, 2006 Hi, everyone. It's been awhile.I 've been out of the hospital for a week and getting worse. I can barely stand now. My heart is a mess, with its irregular beats, or tachycardia, or just plain pain. My stomach kills me from time to time, and I have diarrhea all the time. My muscles ache, and on and on. I've lost a lot of weight (I'm down to 108, when I normally weigh 125). Anyway, I've been referred to the Mayo Clinic in Mass. Can anyone tell me anything about it? It's about a 12 hour drive for us, I think. I don't know how I'll make it there, as I can barely travel the fifteen minutes it takes to get to my doctor's office, but we have to try.I'm being referred by my gastrointerologist, who hopes to get me in next week. Is this a fantasy for him? I thought the waiting list at Mayo would be quite lengthy.I'm also concered that my gastro. is referring to the gastro. department up there, and maybe that's not the problem. I am having a lot of stomach pain (I have ulcers), my gastritis is terrible, etc., but I think, as do some of my other doctors, that my GI problems have an underlying cause that is not gastro. Will the docs there send me straight away to one of their colleagues if they suspect this is the case? I would hate to have to make that drive twice, if I'm sent home, only to wait for another appointment. I'm currently being tested for Churg-Strauss Syndrome. Docs have ruled out mastocytosis. I do have an immunologis Univ. of Mich, Ann Arbor, looking at my bone biopsy slides and medical tests from my last two weeks in the hospital here, and he has ruled out mastocytosis and doesn't believe in any other form of mast cell disorder. He said that if it's not mastocytosis, then it's not mast cell. I've read so much about mast cell disorders, the ones different from the diseases (mastocytosis). Anyone an opinion on this?Thanks, everyone. It's been a long haul for all of us. My husband, who has been so supportive, is on his last supportive leg. We've had to move into my mother's house, as it's closer to the hospital, which hasn't gone over very well, and my son and mother are having to help out with me now, as well. I'm worn out like you would not believe. Hope you all are doing well. LindaJoy Quote Link to comment Share on other sites More sharing options...
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