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Cryoglobulinemia: Want to connect
Blood Cancers & Disorders | Last Active: Jan 9 10:02am | Replies (17)Comment receiving replies
@zebra22. I know how difficult it is to have so many doctors. It can be very confusing for me. Luckily, most are on the same patient portal so they can all see test and imaging results. And i send my primary doctor notes from time to time just to make sure she’s “in the loop.”
I also keep a small divided notebook with a space for each doctor/speciality. I jot down questions, lab tests or imaging, what the doctor says, and new medicines (or cancelled ones). This notebook goes to all appointments with me!
What do you do to keep everyone straight?
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I also keep a binder with all my medical stuff in it now. I also have all my doctor information and medication information with me all the time. So far I have made sure to inform all my doctors, including my eye doctor, of the diagnosis of cryoglobulinemia. I don't know which one or how many of them it will affect. Better for them to have the information and not be affected than be affected and not have the information. I just don't know which doctors will be involved since it feels like my system is one ball of tangled yarn. It can't be a simple question to ask.