3 ms·

There's something about routine diagnostics that causes docs to not put a lot of effort into interpreting the data. I had a sleep study plus MSLT done because

There's something about routine diagnostics that causes docs to not put a lot of effort into interpreting the data. I had a sleep study plus MSLT done because my doctor suspected narcolepsy. The MSLT results came back just shy of the textbook definition of narcolepsy. Basically you take 5 15-minute naps and if you fall into REM sleep during 3 or more of the naps, insurance will accept a narcolepsy diagnosis. When I read the summary though, it was obvious there were at least some mistakes in interpreting the data. I can't remember the details, but my doctor wasn't impressed and wanted to look at the data himself. Long story short, the place I got the test done at had no protocol for transferring that data anywhere. Which, btw, is a requirement under HIPAA. I have a legal right to have access to that data and to have it sent to another medical professional. From what I understand, the software they use has a proprietary file type and my doctor couldn't open it with anything he had. They could print it out, but it would be hundreds of pages and I'm not convinced they actually would do that unless I threatened to file a HIPAA report. I ended up having to go to a different facility for another sleep study so that my doctor could actually see what was going on. If you've ever had one done, you know exactly how pleasant they are. 2 within 2 months of each other because the doc at the first place phoned it in is just ridiculous. The data from the last study was clear enough that my doc was able to diagnose me with narcolepsy. That diagnosis allowed me to have Xyrem covered by my insurance. Between that and nuvigil, I'm still tired sometimes, but not the way I used to be. It took 8 years of being exhausted and miserable to finally find a doc that had the knowledge and the motivation to figure out what the hell was wrong with me. Even with a good doc, I still had to deal with the lack of effort some docs put into interpreting routine diagnostic tests.

netizen-936824 4y ago
Data mobility is a huge problem in the sciences and medical field. For years, companies have been leeching off researchers by trapping them into their proprietary data types which forces them to purchase expensive software licences and prevents sharing due to the need for again, expensive software This is why open source and open data is important
- guzik 4y ago
  Can you elaborate on this? I was working on few expensive, proprietary software for the apnea & ECG analysis and they had rather simple method for exporting to the EDF format.
teslabox 4y ago
> my doc was able to diagnose me with narcolepsy. That diagnosis allowed me to have Xyrem covered by my insurance. That’s a very effective but highly controlled substance. My introduction to Xyrem was via a simple statement: “Sometimes people sleep but don’t get rested. Those people can take gamma hydroxybutyrate, which is found in passionfruit.” I haven’t found any confirmation of passionfruit having this substance. I got a friend some passionflower tea, and she found it remarkably effective for helping her drift off to sleep. It’s a safe simple compound, easy to synthesize with lab chemicals. But it also has nefarious uses, so it got scheduled. “Sodium oxybate is the sodium salt of γ-hydroxybutyric acid (GHB).”
- msrenee 4y ago
  Honestly I'm surprised it's even on the market. For as long as it's taking to get fairly harmless marijuana approved for medical use, I'm not sure if any actual rational reason why Xyrem isn't facing the same issue. GHB can definitely kill you if you misuse it or combine it with other CNS depressants and has recreational value. GHB is also used in some European countries to help people quit alcohol. That's not why I started taking it, but it's largely replaced my alcohol consumption even on the weekends and to my knowledge I'm healthier for it. I can't take both on account of it can kill you and Xyrem knocks me out without giving me a hangover the next morning. I'm finding myself less and less interested in drinking even on days where I don't have to function in the morning.

netizen-936824 4y ago

Data mobility is a huge problem in the sciences and medical field. For years, companies have been leeching off researchers by trapping them into their proprietary data types which forces them to purchase expensive software licences and prevents sharing due to the need for again, expensive software This is why open source and open data is important

guzik 4y ago
Can you elaborate on this? I was working on few expensive, proprietary software for the apnea & ECG analysis and they had rather simple method for exporting to the EDF format.

teslabox 4y ago

> my doc was able to diagnose me with narcolepsy. That diagnosis allowed me to have Xyrem covered by my insurance. That’s a very effective but highly controlled substance. My introduction to Xyrem was via a simple statement: “Sometimes people sleep but don’t get rested. Those people can take gamma hydroxybutyrate, which is found in passionfruit.” I haven’t found any confirmation of passionfruit having this substance. I got a friend some passionflower tea, and she found it remarkably effective for helping her drift off to sleep. It’s a safe simple compound, easy to synthesize with lab chemicals. But it also has nefarious uses, so it got scheduled. “Sodium oxybate is the sodium salt of γ-hydroxybutyric acid (GHB).”

msrenee 4y ago
Honestly I'm surprised it's even on the market. For as long as it's taking to get fairly harmless marijuana approved for medical use, I'm not sure if any actual rational reason why Xyrem isn't facing the same issue. GHB can definitely kill you if you misuse it or combine it with other CNS depressants and has recreational value. GHB is also used in some European countries to help people quit alcohol. That's not why I started taking it, but it's largely replaced my alcohol consumption even on the weekends and to my knowledge I'm healthier for it. I can't take both on account of it can kill you and Xyrem knocks me out without giving me a hangover the next morning. I'm finding myself less and less interested in drinking even on days where I don't have to function in the morning.