5 ms·

>I can’t count on doctors _at all_ to move the process forward. This has been my experience as well dealing with fatigue. I was 25 when I finally got diagnose

>I can’t count on doctors _at all_ to move the process forward. This has been my experience as well dealing with fatigue. I was 25 when I finally got diagnosed with sleep apnea, after over a decade of symptoms. How something so common could go unnoticed by the adults and professional doctors in my life astonishes me still today. Eventually, thanks to ego, I questioned the narrative that I was just normal and lazy. Without the internet, I might not have ever learned that sleep studies even exist. I was more than half-asleep for all of my schooling, college, and early professional years. I've spent the last 5+ years trying to catch up.

ClumsyPilot 4y ago
> How something so common could go unnoticed by the adults and professional doctors in my life astonishes me still today. A friend of mine was struggling with a weird disease, 7 years and 5 doctors later he finally found the cause -> vitamin D deficiency.
- cupofpython 4y ago
  ironically my situation was the opposite. My vitamin D was a bit lower than the acceptable range so I kept getting brushed off until I fixed that. It was kind of hard to fix when I was dragging through life by a hazy thread though I can be a PCP check it out - What is the most easily observable "defect" that's tangentially related to your symptoms? What is the most common treatment for that defect? Next patient.
jrockway 4y ago
I think the situation has improved there in the last couple years. I had a friend who I suspected of having sleep apnea. She called her doctor and asked for a sleep study. They gave her a device to wear while sleeping and the diagnosis of sleep apnea came the next day. Getting insurance to approve the CPAP, though... that is still an open problem. Weeks later, no treatment for diagnosed disease.
- avgDev 4y ago
  I'm not sure what your friends financial situation is but maybe try to collect some money for her and buy one? I googled that the average cost is just under $1k for a CPAP machine. If it could change her life then maybe should could even pay it back one day.
  - cupofpython 4y ago
    I second this. Absolutely pay out of pocket if insurance drags their feet. I spent $5k on a mouthpiece for my treatment and would do it again. It is far from an ideal solution, but in the 3 months it takes insurance to get their shit together - your friend could have the energy to work a side job to pay off whatever it costs and just be generally happier overall
    - jrockway 4y ago
      OK good advice, did not know that was an option.
      - cupofpython 4y ago
        note out of pocket doesnt mean independently - definitely still have a professional approve the purchase decision in case something about the configuration needs to be tailored specifically for your friend in my case, i needed to see an orthodontist every 2 weeks to have the mouth piece adjusted. I am not sure how CPAP works to say if it is safe to "plug and play out of the box" so-to-speak
- cupofpython 4y ago
  >I had a friend who I suspected of having sleep apnea. She called her doctor and asked for a sleep study It doesnt sound like the situation has improved. Without a friend like you, would she have received treatment? I think the community has gotten better at addressing the undiagnosed sleep apnea epidemic. When I needed help, there were some discussions about it on forums that I could find with the right search terms. Now, it's become much more common knowledge on the internet that people can spot it in others. which is fantastic. The Doctors still seem to suck at it. For starters, fatigue is possibly the single most common symptom of disease - and is not something proactively asked about by doctors (in my experience). Every doctor at every check in should be asking "How tired have you been?". The fact that you can notice apnea in your friend before trained professionals even suspect to ask about it is the problem. And the bigger problem is that even if we address this for apnea, how are we to know how many other issues are going around waiting for the patients to bring it up themselves? I certainly no longer trust that proactive diagnostic due diligence is being done on anything other than blood test result levels. Doctors rely on patient complaints to govern their behavior. full stop. Check-ins and physicals are way more superficial than most patients understand, imo. Still very helpful, but not nearly enough

ClumsyPilot 4y ago

> How something so common could go unnoticed by the adults and professional doctors in my life astonishes me still today. A friend of mine was struggling with a weird disease, 7 years and 5 doctors later he finally found the cause -> vitamin D deficiency.

cupofpython 4y ago
ironically my situation was the opposite. My vitamin D was a bit lower than the acceptable range so I kept getting brushed off until I fixed that. It was kind of hard to fix when I was dragging through life by a hazy thread though I can be a PCP check it out - What is the most easily observable "defect" that's tangentially related to your symptoms? What is the most common treatment for that defect? Next patient.

jrockway 4y ago

I think the situation has improved there in the last couple years. I had a friend who I suspected of having sleep apnea. She called her doctor and asked for a sleep study. They gave her a device to wear while sleeping and the diagnosis of sleep apnea came the next day. Getting insurance to approve the CPAP, though... that is still an open problem. Weeks later, no treatment for diagnosed disease.

avgDev 4y ago
I'm not sure what your friends financial situation is but maybe try to collect some money for her and buy one? I googled that the average cost is just under $1k for a CPAP machine. If it could change her life then maybe should could even pay it back one day.
- cupofpython 4y ago
  I second this. Absolutely pay out of pocket if insurance drags their feet. I spent $5k on a mouthpiece for my treatment and would do it again. It is far from an ideal solution, but in the 3 months it takes insurance to get their shit together - your friend could have the energy to work a side job to pay off whatever it costs and just be generally happier overall
  - jrockway 4y ago
    OK good advice, did not know that was an option.
    - cupofpython 4y ago
      note out of pocket doesnt mean independently - definitely still have a professional approve the purchase decision in case something about the configuration needs to be tailored specifically for your friend in my case, i needed to see an orthodontist every 2 weeks to have the mouth piece adjusted. I am not sure how CPAP works to say if it is safe to "plug and play out of the box" so-to-speak
cupofpython 4y ago
>I had a friend who I suspected of having sleep apnea. She called her doctor and asked for a sleep study It doesnt sound like the situation has improved. Without a friend like you, would she have received treatment? I think the community has gotten better at addressing the undiagnosed sleep apnea epidemic. When I needed help, there were some discussions about it on forums that I could find with the right search terms. Now, it's become much more common knowledge on the internet that people can spot it in others. which is fantastic. The Doctors still seem to suck at it. For starters, fatigue is possibly the single most common symptom of disease - and is not something proactively asked about by doctors (in my experience). Every doctor at every check in should be asking "How tired have you been?". The fact that you can notice apnea in your friend before trained professionals even suspect to ask about it is the problem. And the bigger problem is that even if we address this for apnea, how are we to know how many other issues are going around waiting for the patients to bring it up themselves? I certainly no longer trust that proactive diagnostic due diligence is being done on anything other than blood test result levels. Doctors rely on patient complaints to govern their behavior. full stop. Check-ins and physicals are way more superficial than most patients understand, imo. Still very helpful, but not nearly enough