Help- Lost Trust in Doctor

[remraekitty]

Hi, I have never posted here before, brand new.  Someone on Reddit directed me to this forum, and maybe you all can help.  

My doctor diagnosed me with sleep apnea without explaining his diagnosis, and although I know you can't give me official medical advice, I need some opinions.  Sorry for the length 

I was diagnosed with idiopathic Hypersomnia about ten years ago- I had an MSLT and a PSG. 
2011 PSG:

• 2 apneas
  
• 2 hypopneas
  
• Overall AHI of 0.7.
  
• The study showed a mean oxygen saturation (%) of 97 and a low oxygen saturation (%) of 90. Sleep latency was 4 minutes and total sleep time was 350.5 minutes. The tech noted no snoring.
  
• The patient used 0 LPM of supplemental oxygen during the study.
  
• PLMS was unremarkable.
  
• Because the diagnostic portion of the study did not indicate significant nocturnal obstruction, CPAP titration was not attempted.
  
• The spontaneous arousal index was slightly elevated at 14.7/hr (normal < 10/hr). This is a non-specific finding that can be seen in normal subjects but is more frequently observed in those with chronic pain, mood disorders or fibromyalgia. Sleep architecture was normal.
  
• REM was seen during the study.
  
• The study is negative for sleep apnea.
  

2011 Multiple Sleep Latency Test

• Mean latency to sleep was 5:45 (minuteseconds).
  
• Stage II of sleep was seen in naps 2,3 and 4.
  
• REM sleep was seen in Nap 3 with a latency of 14:15 (minuteseconds)
  

Fast forward to today- I moved to a different state. The doctor said I needed a new MSLT and psg before he would prescribe me any medication. I said fine, and somehow scraped together the $6k.
General Sleep Study 2020

• Sleep efficiency (TST÷TRT) was 91.1%. The sleep latency (SL) was 8.2 minutes, and the latency to the first occurrence of Stage REM was 248.0 minutes.
  
• The patient experienced 0 apneas in total of which 0 were identified as obstructive apneas, 0 were mixed apneas, and 0 were central apneas. This resulted in an apnea index (AI) of 0.0. The overall AI for central, mixed and obstructive apnea were 0.0, 0.0, and 0.0, respectively.
  
• The overall apnea-hypopnea index (AHI) was 7.9. The AHI during REM sleep was 4.3. AHI by body-position was as follows: supine AHI 10.7, right-side AHI 4.1, le"-side AHI 0.0 and prone AHI N/A. There were 0 occurrences of Cheyne Stokes breathing, and 0 respiratory effort related arousals (RERAs). The RERA index was 0.0. The respiratory disturbance index (RDI) while supine was 10.71 while when not supine the RDI was 3.65. The total RDI was 7.9. Snoring was reported to be of mild to moderate intensity.
  

MSLT 2020: PHYSICIAN INTERPRETATION:

• Mean sleep latency was 4.44 minutes.
  
  
• The mean sleep latency is consistent with severe physiologic sleepiness.
  
  
• There were 1 sleep onset REM periods.
  

My post-study appointment went fine, he said I had a great night sleep, but that I was super sleepy during the day, so medication is warranted.  He specifically said there were no significant apneas, and that idiopathic Hypersomnia was the correct diagnosis. He said if I had one more REM cycle during my daytime nap study, he could diagnose me with narcolepsy, and it would open up more treatment options due to insurance. He said we could try a different medication (I had been on adderall previously), but I said since I had been off my medication for two weeks prior to the study, I wanted to catch up on work and not have to deal with a medication that potentially might not work. We could reevaluate at my next appointment in three months.

Next appointment came, and he said ok time to get you fitted for your CPAP machine. I was like um???? what?????? This was when our hospitals were completely full and he was rushing around, and I didn't feel comfortable asking questions - he just pushed some masks on me and told me to choose one. I was really uncomfortable, and when I did ask a question he said this was what we discussed and this is his treatment plan. I was like uh ok and just left, feeling very confused, but I brushed it off.  I should have pushed for an explanation but I felt like it would inconvenience him.

I had another appointment a couple months later, and he immediately asked me why I didn't have my CPAP machine with me.  I said I didn't have the money for it right now, but that in 2 months a new insurance plan kicks in with better coverage.  I then pushed a bit, asking why this wasn't brought up at the first appointment and when sleep apnea became my diagnosis.  He said it was always this way, and to follow the treatment plan or else I would never see progress.  I didn't feel comfortable pushing further.



I then contacted two other sleep medicine doctors in my state, and they said they would not see me for a second opinion because my doctor was their professor in med school.  I was kind of floored, and I feel very stuck because I don't agree with the diagnosis.  I was sleepy ten years ago, and it was confirmed I did not have sleep apnea.  Now I am just as sleepy, and the doctor says this is the cause.  It doesn't make sense to me.  I see in the results that there was an AHI of 10 when prone, but a couple things: 

• I do not normally sleep prone because it is painful for my lower back (the tech told me I had to sleep on my back for the study)
  
• I was not taking allergy medication (I was told to be off ALL medications 2 weeks prior), and this study was done in the peak of spring.  I remember being very congested, and I have HUGE tonsils... which get bigger during allergy season.  I understand that certain allergy meds can make me more sleepy, but I don't think they took this into consideration.
  

 Can anyone give me advice ? Am I crazy should I just trust him ?  I sort of feel like he's trying to squeeze every cent he can out of me, and I am probably going to have to pay a boatload to get someone to see me out of state.  before I do that, looking for some advice.  Thanks so much in advance.

[Sleeprider]

You certainly have a great deal of data and information from your studies. That sounds really expensive! Only in the one study was any apnea documented, and that would be classified as mild, and certainly doesn't explain the extreme sleepiness you experience. The idea you technically missed a diagnosis of narcolepsy by one REM cycle seems absurd. The question unanswered, is, what would happen if you didn't consult with specialists, and just used your regular doctor to manage your health, sleep disorder and any other issues? The sleep specialty is extremely dysfunctional, even in easy cases. You should see how people with severe central apnea are treated when the doctors refuse to acknowledge anything other than obstructive sleep apnea exists. That is a preliminary thought, and curious what your relationship is with your primary doctor.

[SarcasticDave94]

Yep specialists are buggy and very hit or miss. Either they're good or bad, and most end up bad. See what the PCP/primary doc says about supporting the needs.

[kwhenrykerr]

I quit my sleep doctor quickly after getting more help from my General Dr. and the information on this site. It is a lot of reading and following the post to listen to many ideas.

Get a cpap that can give information and OSCAR help. You may not need it but you need information you can feel good about.
Your education is the reason for this great group of people.

[DaveL]

remraekitty

Welcome to the forum! Really good people have responded with good information.

Me? I don't know as much as them. But I rely on their help and recommend them!

[Dormeo]

Did you ever try the second medication?

It can be difficult to push back against a doctor like your sleep doctor. If you can't get help from your regular doctor, here are a couple of thoughts about re-engaging with your sleep doctor.

* Write out what you want to say ahead of time. This should include summaries of the results of the two sleep tests, plus a description of your current condition. It should also include your specific questions.

* Rehearse. See how long it takes you to go through your points/questions. If it's less than 10 minutes, it's a reasonable length. If it's longer, you might want to tighten it up a little.

* Begin the appointment by going through your prepared points. If he tries to interrupt, say, "I'd like to finish speaking before we start our discussion. This will take me around N more minutes."

* Check to see whether he has answered each of your questions to your satisfaction. If he hasn't, raise them again. Say something like: "I appreciate what you've said, but I'm not hearing an answer to the question about [...]."

* Have someone sit in on the appointment with you. This person can help you by taking notes and intervening if necessary, by addressing you, "Have you gotten an answer to your question about [...]?

And actually these can be good strategies for interacting with any health-care professional. The good ones will appreciate the thought you've put into preparing for the appointment.