Susan
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Posts: 211
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Maiysa,
I don't know if they will do a bone marrow biopsy if they think you are most likely to have MCAD. But regardless, I understand it is much less trouble than a spinal tap. The spinal tap causes all kinds of trouble because they withdraw spinal fluid, which causes headaches and other issues. If you are premedicated for the bone marrow biopsy, I understand it is a piece of cake with a good doctor. Deborah has her story on the board somewhere, and the info on premedication is also here. But I wouldn't worry till you get to it.
I do understand that you could have the GI biopsy looked at again. I asked the UC docs about it. They did mention, though, that it very much depends on how good the biopsy was, whether it would be worth a second look for mast cells. I may do this too, but know that the report on my GI biopsy makes it sound as though the samples may not be adequate. What a shame, as it was a real pain for that one. But, I know it matters, because one area of the gut may have elevated mast cells, and another area may not. Plus, the differences are not visible, and an doctor who isn't knowledgeable may not take enough samples to get a good idea.
This board is fabulous for knowledge and support. I am happy to help if I can.
Lisa, I will put the docs info into the Doctor section. I wanted to get the OK first, as I am far from knowing as much as you all do, and didn't want to lead people astray. But I don't think people woudl leave UC Davis feeling abused, or even ignored. which is a big improvement over most places.
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