Forum · What question do you WISH your physician had asked, to have gotten your diagnosis sooner?

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[-] BrainsNeedSleep +2 points · about 2 years ago Sleep Commentator

If you were not diagnosed with your sleep disorder until you had had it for a long time, maybe even for years, think about your past appointments with your primary medical-care contacts, and think about:

What question do you wish they had asked you, that you think would have gotten your sleep disorder diagnosed early on?

I am asking because I am one of the patient volunteers on this project and I am very curious about possible new screening methods to get people diagnosed sooner.

For example:

After spending many, many years trying to get a doc to investigate what was going wrong, I finally got diagnosed in my 50's. But I had been asking very specifically about sleep for decades, and the time I remember most vividly was when I went to a doc when I lived in Boston, and said I couldn't sleep and was desperate for some. I was already having some constant exhaustion, mental slowing, difficulty making certain decisions and analyzing some information, increased clumsiness, etc...

MD's first question: How much coffee are you drinking?

My response: (to add up how much I had at home, 2 big mugs, then the half-cups at the hospital, where I worked, that nasty, over-heated brew you find in the back room at nurses's stations...)

Me: 10.

MD: There you go. Quit drinking so much coffee!

Me: oh.

MD: (discussion of weaning vs. cold turkey)

Me: ok.

Result: sometimes when you hear hoofbeats, it IS zebras, docs! And sometimes the answer is the egg before the chicken...

But I couldn't think well enough to ask the obvious question -- why do I need to be drinking so much coffee? -- to him in that appointment; only later, when I was too tired to call him dropped down my To-Do List...

But I can point to the weekend I quit caffeine cold turkey to the speeding up of the decline, the slide down the slope from simple not-good functioning to eventual utter crash.

I was drinking coffee unwittingly because it is known for helping people's brains work a little better with routine tasks, so small doses throughout the day helped me limp along a little better -- for a while.

-----> So what question would YOU like to have had your physician/PA/APRN ask YOU that you think would have gotten your sleep disorder diagnosed when you think it first showed up? Thanks!

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[-] DanM +2 points · about 2 years ago Sleep Enthusiast

Hi @BNS. This is a great question. I now know that I've had sleep apnea since I was a child. I think I am one of the lucky patients with an excellent primary care physician who knew what to ask right away. When I finally complained of fatigue and difficulty staying awake to my primary care physician, the initial question he asked was, "Do you snore, or has anyone ever told you that you snore or gasp for breath while you are sleeping?" When I answered yes, he immediately said he was ordering a sleep study. It would be great if primary care physicians would do some screening as part of general office visits. My own sleep apnea might have been treated much sooner vs. when I was in my late 20s/early 30s if I had been asked this simple question early on.

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[-] Jorja +1 point · about 2 years ago

Hi BNS. I don't have sleep apnea, but RLS and PLMD. I know I've had the RLS for at least 20 years, the PLMD there is no way to know because I twitch in my sleep. For me it took several years of increasing tiredness, lack of energy and weight gain. I mostly got the menopause thing from my Dr., as well as that a lot of people eat more than they think, exercise less than they think, etc. Yet only a few years before I had been pretty fit and weighed 20 pounds less. My Dr. finally suggested a sleep apnea test after she had just attended a conference on sleep disorders. I was misdiagnosed with sleep apnea with a home test, then properly diagnosed with a PSG. Like you, I have been hooked on increasing amounts of caffeine over the last few years. I have never been a coffee drinker but got hooked on iced caps....I needed that caffeine to wake me up enough to feel like it was safe to drive. I am currently taking clonazepam to sleep at night, tried Mirapex but it make things worse. I still need the caffeine, but my sleep Dr. said it could take quite a while to make up that sleep debt. I really like my primary Dr. but I wish she had trusted that I knew something was wrong sooner, rather than later, and what if she had never gone to that conference. I think a lot of people need to be more aggressive, me included, in trusting that you, yourself, know when something is wrong and pushing the Dr. a bit more.

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[-] BrainsNeedSleep +1 point · almost 2 years ago Sleep Commentator

@Jorja, thanks for the post. I agree, I wish the docs would more often trust that we know something is wrong, even if we aren't presenting the information they are expecting to hear, or haven't heard before... In the interim period between my first post and this comment to you, my treatment with my ex-sleep-doc hit the wall for me, and I found another doc and another treatment that -- so far -- is working much better. Better enough, in fact, that I can get back on here and check in. IF you can, try looking at your sleep via SleepyHead software -- I am a big fan as are many others who are into looking at graphic data -- you might find some interesting things....and come back here to find out more. Best wishes. And I am glad your doc went to the sleep conference. Big step in right direction.

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[-] FosterMamaLiones2000 +2 points · over 1 year ago

Hi, I was recently diagnosed with sleep apnea, thanks to my OBG/GYN, he is one of a dying breed, he actually listens to his patients, he researched my files when nothing looked abnormal he immediately referred me to the sleep clinic. For 13 years since my kidney transplant I have been complaining to my primary doctors and other doctors about my fatigue, they would just run test for animiea or thyroid, but after they came back normal they would just say I needed to exercise more or try to go to bed early. I did gain a large amount of weight after my transplant, which was what I thought had to do with my excessive snoring. I wish I had brought it up to my OBG sooner, but in my opinion it's not his responsibility to pick up other doctor's slack. I just wish there were more doctors like him that listen and follow up.

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[-] DanM +1 point · over 1 year ago Sleep Enthusiast

I'm glad you have a doctor who is on top of things and thought about ordering a sleep study! Hopefully, you have some information now that can help improve the way you feel!

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[-] PatientVioletBear0961 -1 point · over 1 year ago

"Would you like a referral to sleep medicine?" That is the question I wish a primary care provider would have asked me.

For about 15 years I told every primary care provider I saw about the chronic fatigue I was having, that was severe enough to really make me miserable and undermine my ability to function normally, and that appeared to be caused by poor sleep. (I had also had some subtle signs of a sleep problem for a long time even before the fatigue had become a big problem for me.) Some of the primary care providers I spoke to ordered blood tests to check my thyroid hormone levels, iron status, and etc., which always came back normal. One doctor told me that I had mild depression and it would go away on its own after a while, a diagnosis that made no sense since I was one of the happiest, most enthusiastic, and most motivated people I knew in all ways other than being a bit unhappy about my chronic fatigue problem. Some primary care providers encouraged me to exercise, eat right, and practice good sleep hygiene, all of which I reported that I was already doing so much so that I had gained a reputation as a health fanatic. Some doctors honestly stated that they did not know what was causing my fatigue and did not have any treatment to offer me, others avoided responding to my fatigue complaint if I let them. Over time I became less vocal about the problem because it appeared that modern medicine just didn't have any way of helping me. No primary care provider ever offered me a referral to a sleep medicine specialist. But I couldn't hold back from continuing to search for a solution on my own, since the fatigue was really difficult to live with. Eventually I learned of the existence of the sleep medicine specialty through my own information gathering, and I assertively demanded a referral. It was only after seeing a sleep medicine doctor that my sleep apnea was eventually diagnosed and I am now in the process of being treated for it.

I think the reason why primary care providers did not offer me a referral to sleep medicine was because I did not look like a classic sleep apnea patient being a slender, young female who doesn't snore. But even so, shouldn't a possible case of insomnia, or some other sleep disorder, be referred to sleep medicine when the problem is causing major effects on the patient's life and is not easily solved with lifestyle modifications?! My experience seems like a really big fail on the part of primary care.

[+] [deleted] +0 points · over 1 year ago
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[-] wiredgeorge +1 point · over 1 year ago Sleep Enthusiast

I personally had NO idea that I had sleep apnea. I never heard of it and thought I was falling asleep while driving and operating power tools because of blood sugar issues... I am a type II diabetic. My wife told me I snored like a freight train and would quit breathing and then start with a gasp. She took a video with her phone because I didn't believe her. I guess I didn't hear myself snore. In any case, I did my own investigation and found the word apnea. I told my PCP and she was sort of clueless but gave me a prescription for a sleep study.

Prior, I had a night full of shallow sleep, constant fleeting dreams and had to get up constantly to go to the bathroom. As I said, I was constantly falling asleep.

The sleep study resulted in a prescription and I had to discuss this prescription with my PCP and she then actually wrote the prescription for the BIPAP machine and pressure values and I picked out a med supply place and the ball was rolling. PAP therapy has been a revelation! No more nodding off while driving or working and no snoring, no low O2 levels and best, I sleep like a log with no memory of ever dreaming. It is a process more than everything falling into place because at first, I would sleep 4-5 hours tops and wake up and now my sleep time is stretching out to 5-7 hours and I have even learned to roll onto my side if I start to wake up and can then go back to sleep because my back tends to get sore if I sleep more than 6 hours or so on my back. I have learned to set up my pillows in a certain way to avoid sore back.

What should the PCP ask? When you have a routine physical, ask how you are sleep in more than a cursory manner. How long, Do you doze during the day. Does your missus complain about your snoring.... a lot of things could be asked, particularly from higher risk (for Apnea) body types. I think the doctor is lost when they are not cutting or giving out pills. More education on their part would probably be a godsend to a LOT of people who are undiagnosed.

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