Diagnosed then undiagnosed?

[joshelmintz]

Im at a loss for words at the moment and I hope someone has been in this position and can help. 3 years ago I was diagnosed with Obstructive Sleep Apnea and was put on a BiPAP machine. I was very excited because I had hoped that this was the end of daytime sleepiness once and for all. Not only that but I had also recently been diagnosed with prediabetes and had read about the connection between the two. I continued having issues with the daytime sleepiness, but the machine stopped my snoring and I didnt toss and turn while using it. I gave the machine some time to do its thing, but when the fatigue continued my doctor ordered another titration study which revealed Central Sleep Apnea. I was put on a BiPAP ST, and after no relief was put on an ASV but wasn't titrated to it. My doctor referred me to a pulminologist, who reviewed my test results and said that they were garbage and useless and ordered me to start over from scratch with a sleep specialist that he was partners with. I went for the study last Thursday night and got the call today that I do not have sleep apnea and have been on a machine for 3 years for nothing. My question is who do I believe? Has anyone else had this happen to them and if so what did they do?

[chunkyfrog]

Are you by any chance in an HMO?
You know how or whether therapy is helping.

[JDS74]

What does your machine say in the reports?
AHI, # of OSA, CSA, etc. events.

It should be clear one way or the other.

[ems]

No, I haven't had this happen to me. However, I would tend to believe the new sleep specialist. Sounds to me like an honest doctor. He won't make a penny off you by telling you that you don't have sleep apnea.

You could take the results of your latest sleep study to another doctor if it would make you feel better.

[BlackSpinner]

I think you need to meet with that sleep doctor face to face and go over that sleep study and the old one and your machine's data in great detail.

[robysue]

I agree with BlackSpinner. You need to meet with the sleep doctor face to face and go over that sleep study and the old one and your machine's data in great detail. You also need to find out exactly what standard (AASM Recommended or AASM Alternative) was used to score hypopneas on both studies. That alone could account for a discrepancy in the results in some circumstances.

[Todzo]

Im at a loss for words at the moment and I hope someone has been in this position and can help. 3 years ago I was diagnosed with Obstructive Sleep Apnea and was put on a BiPAP machine. I was very excited because I had hoped that this was the end of daytime sleepiness once and for all. Not only that but I had also recently been diagnosed with prediabetes and had read about the connection between the two. I continued having issues with the daytime sleepiness, but the machine stopped my snoring and I didnt toss and turn while using it. I gave the machine some time to do its thing, but when the fatigue continued my doctor ordered another titration study which revealed Central Sleep Apnea. I was put on a BiPAP ST, and after no relief was put on an ASV but wasn't titrated to it. My doctor referred me to a pulminologist, who reviewed my test results and said that they were garbage and useless and ordered me to start over from scratch with a sleep specialist that he was partners with. I went for the study last Thursday night and got the call today that I do not have sleep apnea and have been on a machine for 3 years for nothing. My question is who do I believe? Has anyone else had this happen to them and if so what did they do?

A couple of the basics:

We have no idea what causes Obstructive Sleep Apnea

We have no idea how to cure Obstructive Sleep Apnea

There are many who appear (some tested as) cured - apparenlty by various means

I occasionally do see those on these forums who have had an experiance like yours - diagnosis positive - later - diagnosis negative

The testing procedures are noted to have false positives and negatives.


I think your body simply found a way to cure whatever was causing your sleep apnea or that the cause of your sleep apnea is not longer in your enviornment.

If I were you I would make a habit of recording my nighttime audio and review regularly for signs of OSA (you can often "see" events in the audio waveform in an audio waveform editor such as Audacity).

Get a BP monitor and measure your morning blood pressure. A big jump could be a sign that OSA is back.

Check your vitamin D levels. Those who are working with the D3 hormone (A.K.A. Vitamin D3) (e.g. Dr. Stasha Gominak, Michael F. Holick, Ph.D., M.D., Vitamin D Council) seem to be finding that the very low side of the “normal” range of 30-100 ng/L produces a range of symptoms including OSA, pain, and infection. All believe that a level lower than 50 ng/mL is not good and Dr. Stasha Gominak recommends 60-80 ng/mL for good health.

[joshelmintz]

That is a very good idea Todzo thanks. I have a family member that has a blood presure cuff so I will borrow it. Im not sure about the testing procedures and how they differ at the different places. What I do know is the pulmunologist had nothing nice to say about the first place I went to calling them business men rather than sleep specialists. I have my blood checked and monitored every three months because of prediabetes or regular diabetes depending on who you ask and my Vitamin D3 levels are in the normal range. There was a deficiency last year but supplementing D3 took care of the problem and it has been normal since. I will start recording myself at night and see whats happening . Thanks for your input!

Im at a loss for words at the moment and I hope someone has been in this position and can help. 3 years ago I was diagnosed with Obstructive Sleep Apnea and was put on a BiPAP machine. I was very excited because I had hoped that this was the end of daytime sleepiness once and for all. Not only that but I had also recently been diagnosed with prediabetes and had read about the connection between the two. I continued having issues with the daytime sleepiness, but the machine stopped my snoring and I didnt toss and turn while using it. I gave the machine some time to do its thing, but when the fatigue continued my doctor ordered another titration study which revealed Central Sleep Apnea. I was put on a BiPAP ST, and after no relief was put on an ASV but wasn't titrated to it. My doctor referred me to a pulminologist, who reviewed my test results and said that they were garbage and useless and ordered me to start over from scratch with a sleep specialist that he was partners with. I went for the study last Thursday night and got the call today that I do not have sleep apnea and have been on a machine for 3 years for nothing. My question is who do I believe? Has anyone else had this happen to them and if so what did they do?

A couple of the basics:

We have no idea what causes Obstructive Sleep Apnea

We have no idea how to cure Obstructive Sleep Apnea

There are many who appear (some tested as) cured - apparenlty by various means

I occasionally do see those on these forums who have had an experiance like yours - diagnosis positive - later - diagnosis negative

The testing procedures are noted to have false positives and negatives.


I think your body simply found a way to cure whatever was causing your sleep apnea or that the cause of your sleep apnea is not longer in your enviornment.

If I were you I would make a habit of recording my nighttime audio and review regularly for signs of OSA (you can often "see" events in the audio waveform in an audio waveform editor such as Audacity).

Get a BP monitor and measure your morning blood pressure. A big jump could be a sign that OSA is back.

Check your vitamin D levels. Those who are working with the D3 hormone (A.K.A. Vitamin D3) (e.g. Dr. Stasha Gominak, Michael F. Holick, Ph.D., M.D., Vitamin D Council) seem to be finding that the very low side of the “normal” range of 30-100 ng/L produces a range of symptoms including OSA, pain, and infection. All believe that a level lower than 50 ng/mL is not good and Dr. Stasha Gominak recommends 60-80 ng/mL for good health.

[joshelmintz]

I meet with the Pulminologist on Monday. When I was refferred to him, I took all of the results from my first 3 studies and showed him. He looked at all of them laughed and said that they should have never diagnosed me with sleep apnea based on the data that they had for one main reason. I had no sleep during the tests. No REM Sleep at all! Now just to note, Back when I was going for my new titration, I asked this company if they had enough data for an accurate diagnosis based on the fact that I didnt sleep. They people I spoke to said "Oh yeah we have more than enough and we just have to get you titrated properly and youll be good. The pulmonolgist said I should have been sedated with a pill if I couldnt sleep "which he did for the latest PSG" to get the whole picture of how I sleep and whats going on if anything and how to treat. I also brought all of the results from my machine but after the conversation with him about my first studies I didnt feel he would even take those into consideration due to the fact of not being tested properly in the first place and put them away.

I think you need to meet with that sleep doctor face to face and go over that sleep study and the old one and your machine's data in great detail.

[joshelmintz]

Yes I am in a HMO. Its insurance through my job. The problem is the therapy hasn't really helped me which is why I had so many titration studies. It stinks that I have invested all of this time and money into this to feel better and low and behold I apparently never had OSA or any Apnea at all. Im strongly considering speaking with an attorney after talking with the pulmonologist on Monday.

Are you by any chance in an HMO?
You know how or whether therapy is helping.

[zoocrewphoto]

Can you post some of the sleep study results?

Yes, you do need to sleep for a diagnosis. But you don't need to reach REM. I certainly didn't, and I had an ahi of 79. I was waking up so frequently from apneas that I couldn't get to REM sleep.

Right now, you don't know if the sleep doctor was out to make money by diagnosing everybody or if the newer doctor is somebody who thinks only certain people get sleep apnea. It would be more helpful to actually see data. How long you did sleep. How many events you had. Graphs showing the sleep stages and oxygen levels.

[JDS74]

You might reconsider taking your machine reports to the pulmonologist since they will contain much of the data that would come from a sleep study. For example, they wiil contain AHI, OSA, Hypopnea, etc. data.

I recommend you not go the legal route since it it will be difficult to be able to demonstrate any long term injury. You insurance has been paying for your sleep studies and the various CPAP machines so your out-of-pocket costs will be small.

On the other hand, filing a medical malpractice claim gets you tagged as someone who sues doctors. Many doctors won't accept new patients who have done that, especially when the injury is very slight. With the new and oppressive cost cutting reimbursement rules in the Affordable Care Act, doctors are incentivized to avoid patients who may increase their costs. Lots and lots of folks of Medicare age are finding their choices in doctors being severely limited as doctors choose to not accept any new Medicare/Medicaid patients.

[chunkyfrog]

Having suffered through the mistreatment possible with an HMO, I have avoided them like the plague;
Especially when it was revealed that in the past doctors had been "encouraged" to raise the bottom line even at the detriment of their patients.
Even though the scandal had blown over, HMO's still exist, as do their gag orders and non-disclosure agreements.
I will have nothing to do with them as long as I have a choice.

[joshelmintz1]

I dont have my previous studies on hand at the moment however I will post my previous test studies either tonight or tomorrow. I do not have the new test results from the pulminologist yet, will probably get them monday when I see him. In all honesty, with the legal route Im not sure what to do about that just yet. It is true that there is no long term injury and costs have been minimal to me, but I'm not after the money just public exposure for the company. If they are not testing people properly as my pulminologist suggests, Im willing to bet there are more people in this area having the same or similiar issues. If they are testing people properly and adjusting their findings so they can make more money at our expense then they need to be shut down and those responsible prosecuted.

[BlackSpinner]

, but the machine stopped my snoring and I didnt toss and turn while using it.

Just a note: This is a valid use of a cpap therapy. It means it wasn't a waste of time or money and was effective for something. It maybe that it stopped something borderline. I know people who used cpap therapy strictly for the snoring reason.