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I truly appreciate your thoughts, and what you say makes sense. We have been in touch with the SDS foundation, and that has been helpful. The doctor suggesting SDS is actually our GI doctor, so he can't actually deliver the diagnosis - we need a good hematologist to sort this out. The reason why our current hematologist didn't lean toward SDS, even though they fulfill diagnostic criteria, is that they "look too healthy." It is true they hardly ever get sick. I guess what I am trying to figure out is.... if indeed it is CBN, is this doctor reasonable to not want to do at least one BMB - you answered that for me and I appreciate your take on why he may have been reluctant. But like you said, the "trouble is, the diagnosis is in doubt". Makes sense. What do you think is more typical - that a doctor DOES or DOES NOT order a BMB if CBN is suspected? Also, was wondering if his fever protocol (do nothing, don't even draw blood) is reasonable in the case of mild CBN. Bottom line is, I am trying to decide if this doctor is reasonable and trustworthy, or whether we should just find a new hematologist. If he is not being reasonable even with his protocol for a typical CBN patient, (let alone an SDS patient) then for sure we should move on. Thank you again for your help. So much!!!
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