Incidence of undiagnosed OSA...... RANT

[Tasmania]

I have no doubt that this has been kicked around many times before but I just can't keep myself from asking it anyway. Through my long journey through ignorance, denial, fear, resignation, and finally acceptance of my own apnea problem I have come to wonder... why doesn't the medical profession do more to identify undiagnosed sleep apnea? Honestly... in all the years since I first had a friend tell me I scared her to death by not breathing while I was sleeping... not a single doctor, nurse, or anybody else ever asked me anything that would lead to a suspicion of apnea. True... I didn't say anything about the increasing volume of my snoring or the long pauses in my breathing... but then I didn't even know what apnea was much less that it was a MAJOR health risk until after my dad was diagnosed and he started telling me about it and asking me questions. How can patients complain about symptoms if they don't know they ARE symptoms.

Even the extreme exhaustion and the crappy nights' sleep went unremarked by my doctors (and I DID complain about that... A LOT!!) because I am on half the pharmacy due to complications from a major injury 8 years ago. Every doctor automatically assumed I was tired because of the drugs. Yes... the drugs made an existing problem worse... but did any of them stop to consider the fact that the exhaustion predated the drugs?

I'm a big believer in a patient's need to take charge of their own healthcare and seek the help they need regardless of how many doctors put them off. But this is one area where it seems health professionals need to do more to screen for OSA. I mean... when I go to a new doctor I have to fill out endless forms listing every medical problem of every relative in the last 2 generations. And I have to check off box after box of screening questions about myself. Why the heck don't they add questions relating to OSA? It wouldn't take much more ink! Heck a lot of the questions are already there: history of heart disease in the family? check... high blood pressure? check... diabetes? check.... obesity? check... Throw on a question about snoring and quality of sleep and it doesn't take a neuro specialist to guess it might be worth checking out the possibility of OSA.

[Slinky]

Good question. But then I'm not impressed w/these health histories consisting of questions the answers to which are tabulated by computer. H*ll I don't think most doctors look much past the first page or two of your medical records during your initial office visit - or afterwards. Why on earth would I expect they'd look at those computerized compilations? Do you ever notice most of them don't even hear you after you mention your third or fourth symptom or complaint?

I once mentioned to a doctor that I was amazed at the number of discrepancies in my medical records that couldn't all be explained by transcription errors. His comment? That why I always dictate my notes after every 3rd patient!!!! Every THIRD patient?? Sheesh! Why not after EACH patient? Or better yet, why not, like one doctor I saw, dictate the notes right then and there in front of the patient w/a pocket tape recorder? I've often wished I had the moxie to ask a doctor if I could tape our office visit consultations. Can you imagine the panic that would invoke w/most doctors??

[Tasmania]

Given my medical history their eyes usually glaze over after only 10 seconds. I can almost see my words going in one ear an out the other with zero comprehension in between. Actually... it's a little scary sometimes when I have to explain some of the medical terms I use to the doctor. I mean... I know they aren't specialists in every field known to modern medicine but honestly... some of this stuff is frighteningly common these days and they still have no clue what I'm talking about. Even Reader's Digest has had recent articles about so-called "superbugs" yet I've had new doctors who have no clue what MRSA is... and spelling out the full name only triggers recognition when the hear the word "staph" at the end. They have no idea what the rest is about. And that's only one small aspect of my nightmarish history....

sheesh... I'm just on one long rant today... I'm beginning to wonder if someone spiked my diet Pepsi...

[Slinky]

Giggle. I have to 'fess up. I was feeling kinda crochety again today and I saw your diet Pepsi sitting there ....

[Wulfman...]

When I read your post, the first word that came to my mind was "ignorance".

I was lucky enough to have had a GP that linked my sleepiness to a cause. Also might be that a pulmonologist in their group practice had been doing the sleep study thing for a couple of years and they were becoming more aware of the symptoms and "monetary rewards" for the clinic. At the time I had my sleep study, they had just added another bedroom to the facility for the increased patient load. At that time, there was about a 3 week wait (and this is a pretty small population area).

I think there are still too many physicians that are trained to treat the symptoms rather than the source of the problem(s). There's also more money in it. It's too easy and profitable for them to prescribe pills for whatever ails ya.

This is also a fairly new field of medicine and far too many in the medical profession don't know enough about it themselves. In this era of specialized medicine, the GPs haven't gained enough experience with this one yet.

Den

[tillymarigold]

God, I love my PCP.

At my first visit I spent an hour complaining to her about all my problems (the main ones being uncontrollable weight gain and high blood pressure), and as I was about to go, I said "I know you probably can't do anything, but I've been exhausted since I was 11 years old and no one has ever been able to figure out why and I've tried everything including therapy and drugs and diet."

She stopped, wrote down the sleep center's phone number, and said "Forget everything we just talked about. Call these people. Call them today. Don't put it off and don't forget. You have a sleep disorder, probably apnea, and there's no point in even talking about any of those other problems until you get that diagnosed and treated. Call me again after you start treatment."

[Slinky]

Wow! Impressive! She's a keeper!

[geoDoug]

Well, consider this: the sleep field is very young, having come along within our lifetime. Now add to that the fact that a) older doctors are less likely to keep up on the latest and b) it's not exactly a subject given first priority at med schools. (This last one is purely speculative. Somebody else can confirm or call me full of it and I won't take offense if they know better.)

Doug.

[cflame1]

Slinky,
My sleep doc, dictates while he's meeting with me.

[Slinky]

Neat, CFlame!!!! I wish ALL doctors did! The transcription mistakes and typos are bad enough! I don't need the doc mixing me up w/the patient before or after me!

[RosemaryB]

Some percentage of these docs will have untreated sleep apnea themselves. Maybe that's why they are missing it!

I do think that the system of medical care is a big part of the problem. To begin with, I don't think doctors understand diagnosis very well. It's not just a checklist approach. It's looking at the whole person and having some of the checklists, too.

My approach to the medical profession is to figure out what's wrong with me and tell the doctor about those symptoms and say "I think I have. . ." This is the only way I've gotten testing for any number of things that panned out. I find out what the best tests are and then ask the doctor for those tests.

With my apnea I asked my doctor for the testing and he wouldn't order it for me, although he was a good doc in other ways. This was under an HMO. I didn't fit the profile. Later, with my PPO another doctor caught it and had me tested. I was by then convinced that I didn't have it because I relied on the first (usually good) doctor. I lost at least 4 years of treatment. I should have said something like "I snore (lie) and my bed partner (I didn't have one at the time) says I stop breathing." I realize now that would have gotten me tested. Instead, I believed the other reasons for my fatigue, like getting older, working too much, etc. Thank God for the second doc.

If they find something other than what I know about, too, that's gravy. But, if you tell them too many symptoms at once, they just treat you like a hypochondriac. I just try to figure it out myself.

Diagnosis is just the start. Then there's getting good treatment. I do a lot of research there, too. I try to find the best doctor for my condition. Not always possible, but sometimes that's panned out. For example, I did a lot of looking for an allergist who understood gluten sensitivity and finally found one who has celiac herself. She was way, way better than the other people who knew much less than I did, having read some of the medical literature on it myself.

Whew, it's a lot of work!

[Guest]

Tas, if you stumble across a doc that doesn't know what MRSA is, then run - do not walk - out of that office. Chances are he still prescribes sulfa drugs!

[Guest]

geoDoug, you are basically right. Sleep studies or apnea is not given much attention in medical school. As a matter of fact if you don't specialize in pulmonology or go to school for respiratory they barely even touch on the subject. Truth is most doctors don't even know what harm having a sleep disorder of any kind can do to the body. And they don't care to look. Treat everything else first and sleep last is their thinking. The hospital I worked at was a teaching hospital and we had interns there all the time. It never ceased to amaze me that these people gradutated and were allowed to see patients on there own!! I can not tell you the number of times the nurses and therapist told the doctors what to give or what to do because they had NO CLUE!

[geoDoug]

geoDoug, you are basically right. Sleep studies or apnea is not given much attention in medical school. As a matter of fact if you don't specialize in pulmonology or go to school for respiratory they barely even touch on the subject. Truth is most doctors don't even know what harm having a sleep disorder of any kind can do to the body. And they don't care to look. Treat everything else first and sleep last is their thinking. The hospital I worked at was a teaching hospital and we had interns there all the time. It never ceased to amaze me that these people gradutated and were allowed to see patients on there own!! I can not tell you the number of times the nurses and therapist told the doctors what to give or what to do because they had NO CLUE!

While it's not perfect by any means, I love going to a teaching hospital. (I'm all of 10 miles from Stanford Hospital as my source for all my medical needs.) The doctors have been fantastic. My GP is extremely open to treating the entire body, and not just the symptoms. He referred me to a cardiologist, who in turn referred me to the sleep clinic! (As an aside: the Stanford Sleep Clinic was the first one. They pioneered the field. But I digress...) I've had nothing but good experience with the doctors being up on the latest technologies and whatnot.

The ONLY downside I've found is that in some cases Stanford tends to be a revolving door, with people moving on to bigger things. Case in point: my first Neurologist, who I LOVED, left--to be the Chair of the Epilepsy Foundation of America, which is the largest epilepsy organization in the country. At least I know I'm getting excellent care. I'm always going to live near a teaching hospital.

Doug.

[Mrs Rip Van Winkle]

For the first time in my life I am being very proactive with my health. In preparing for my yearly physical with my GP I looked over all of my medical records. (I have most due to recently moving long distance figuring easier than each Dr requesting them) I noticed my first fatigue complaint was in my 20's...1984. Each visit after it mentioned fatigue as a complaint. In 1999 a Dr wrote in his dictation..."her fatigue is most likely due to sleep apnea". He never mentioned sleep apnea to me and never requested a sleep study. I saw him 3 more times after that. My reason for seeing him in the first place was to figure out my fatigue! I did not have a study until 2003 and that was only because I insisted on it when seeing another Dr.

Today i live my life s a ZOMBIE... I am 100% compliant on my CPAP since day 1...I grabbed on to it and never let go. My AHI is very low but my fatigue is extreme..not just sleepy but malaise, cognitive issues, automatic behavior issues...true fatigue. I have been forced out of jobs, unable to keep a schedule and have lost all those years. Being 48 I am now just beginning to understand it all, see the past undiagnosed pats on the head from the medical professionals and will no longer accept it. I understand that SA research was in it's infancy back in the 80's...but 1999 should have had me in a sleep lab. I feel like a scorn woman....