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DiscussionHow did you make the final decision to begin HU protocol for ET?
Blood Cancers & Disorders | Last Active: Jan 22, 2023 | Replies (75)Comment receiving replies
Replies to "It's very helpful yes. Thank you for sharing. Everyone around me keeps telling me everything will..."
Doctors dismiss what isn't "in the literature." I wish they would at least note these symptoms in rare diseases and then pass them on to researchers to look for commonalities, patterns, and causes. If nothing else, they could tell you that other patients report something similar, no one has established a direct relationship with ET, but it's not in your head. But specialists can be very narrow in their view and very sure about what they think they know.
Fwiw, I have tinnitus all the time. I assumed it was age or possibly jaw issues. I use a brown noise machine at night that helps.