mdthrowaway

> Hate to break it to you, but the OP's edited comment is far less harmful than yours.

It has been significantly, damned near whole cloth, edited in several ways since I said something, so I'd ask a little consideration that I'm coming from a good place. I'm not asking for anyone to avoid discussing Segawa's; I'm specifically responding to the speculation, across multiple comments, that the common element of dopamine as a neurotransmitter makes them related diseases. Given that people attack doctors when they try to arrest harmful discussion like this, I'm taking great pains to not be rude, so I apologize for coming across that way.

If you diagnosed yourself with Segawa's based on Wikipedia, please bear in mind that my single diagnosis across my entire career involved four months of differential diagnosis and observation, and led to a publication. It's simply that rare. There are several much more common possibilities, and I'd ask you to talk with your neurologist with an open mind rather than assuming the Internet has steered you correctly. That's also part of the reason I've responded as I have, exactly due to what you're saying.

My answer to that question will come across snarky or "the medical profession appealing to authority," I'm afraid, because I'd like to see your remarks entirely removed as medically harmful. Your purpose is clear from your other, more to the point remark: if only it had been for a random HN commenter who's never been to medical school speculating about two entirely unrelated diseases based on the presence of a common hormone, you might have avoided the diagnostic history and pain in your family that you report. That's a ridiculous position, both interpersonally as well as scientifically, but I know that engaging on it with you will look like I'm trying to steer people to my field rather than encouraging independent research of our discipline.

I'm here because I'm learning to write software, but I wouldn't pretend to understand the paper or mathematic theory behind, say, Paxos because I recognize some terms in it. I know my limitations, and all I ask is that you consider them, as well. The problem with raising awareness as you are is that it's difficult to objectively remove yourself: Segawa's is _incredibly_ rare, making all of the events in your family difficult to explain. Scientifically, transferring your experiences to others is a very tall order without much further study (and I hope you, and your family, are being studied, specifically because the genetics of Segawa's are poorly understood). What people portray as medical professionals swinging the hammer on "the information that could make us irrelevant" is actually trying to stand fast to the exact same scientific discipline that you, and every member of this audience, does in _every single other context_.

Your speculation about the relationship between ADHD and Segawa's is so far off base that a second-year medical student could probably explain why; you just happen to have been diagnosed with both. Left unspoken: it is quite possible to have both, because they present and manifest in different ways.

I'm not misinterpreting your post. You diagnosed the author with Segawa's based on your experiences by pointing out you wouldn't be surprised if he "had something similar". He does not, with certainty. You're also warning folks that the only consistently successful treatments we have for this (much, much more common) hyperactivity disorder are associated with unlikely neurological outcomes. Sure, an 8x increase sounds high, until you realize that it's multiplying a mere fraction, context you do not include.

I'm sorry to appeal to authority here, but comments like these do actually harm people by shying them away from treatment (just look at your replies), and please don't write them. Again, I'm sorry you're dealing with Segawa's, but even your edits in response to my comment are making your statement more harmful because they're based in pure speculation.

Segawa's is completely irrelevant in this case and not supported by any symptoms the author reports in the original article. I have diagnosed Segawa's. It is quite irresponsible to wave people off of successful treatments of ADHD, as you're doing here, because of your family's (unfortunate) history with a genetic disease. I apologize that we know little about Segawa's and you've had a journey to understand it, but there is approximately zero overlap between common ADHD symptoms and the presentation of Segawa's, which is primarily motor-related.

Please, don't read comments like these and distance yourself from treatment. There is always more to a study.

Source: Board-certified neurologist.