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trystinnSo - the biggee - I'm still inconclusive for Lupus or anything specific. So tentatively, they are saying "Mixed Connective Tissue Disease". Which from what little reading I've been able to do basically is a place holder diagnosis until something definitive presents or the patient gets sicker.
The inflammation test for a regular person is 8, I'm 28. So yes, something is definitively WRONG within my tissues. ANA is still positive, speckled, etc. Lupus titers are off, but not definitively Lupus. Inconclusive for Lupus, yadda-yadda on several other tests. It is absolutely NOT arthritis, though.
Basically, the doctor agrees, my tests come back zebra, not horses. I'm off on several things, I'm too healthy to be very sick, but sick. And he won't give me any treatment because what he could give me is toxic. He needs to know why the spleen is enlarged and how it is affecting the body, so he knows what results to rule out. So he's referring me to a Gastro-enterologist in his practice and wants to see me again in a month. Treat the pain in the meanwhile.
For everyone who has wished me well, thank you. Much gratitude and zen hugs. Staggering but not out!
Off to do more research!
The inflammation test for a regular person is 8, I'm 28. So yes, something is definitively WRONG within my tissues. ANA is still positive, speckled, etc. Lupus titers are off, but not definitively Lupus. Inconclusive for Lupus, yadda-yadda on several other tests. It is absolutely NOT arthritis, though.
Basically, the doctor agrees, my tests come back zebra, not horses. I'm off on several things, I'm too healthy to be very sick, but sick. And he won't give me any treatment because what he could give me is toxic. He needs to know why the spleen is enlarged and how it is affecting the body, so he knows what results to rule out. So he's referring me to a Gastro-enterologist in his practice and wants to see me again in a month. Treat the pain in the meanwhile.
For everyone who has wished me well, thank you. Much gratitude and zen hugs. Staggering but not out!
Off to do more research!
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no subject
Date: 2012-07-19 12:59 am (UTC)no subject
Date: 2012-07-20 05:23 am (UTC)and may you get answers sooner than later.
"a horse of a different colour" though ... good thought that.
no subject
Date: 2012-07-20 11:35 am (UTC)This is probably a silly question to ask *you*, but have you created a spreadsheet for tracking your bsg? If anyone has . . . it's you. ;-)
About to make my own "the results are in" post.
no subject
Date: 2012-07-21 02:02 am (UTC)no subject
Date: 2012-07-20 08:32 pm (UTC)You would make a FABULOUS stylish zebra ... :D
Good luck getting an appropriately fabulous diagnosis!
no subject
Date: 2012-07-21 02:01 am (UTC)