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Discrepancy With Written Diagnosis And Doctor's Words


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#1 Intreble

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Posted 15 July 2013 - 09:47 PM

Hi everyone. I had my PSG and MSLT in September of 2011. I was instructed to stop taking all medicines for two weeks before the study. I was worried about my Cymbalta-I called my psychiatrist who advised three days off of the Cymbalta was the most she would let me do. The evening of my study I didn't feel great, but not terrible either. The PSG was fine. The next morning I felt a little closer to terrible. When they woke me up after my second nap, I went into full anxiety attack mode. The technician contacted my sleep specialist and she came back to me and said we could end the MSLT and that she thinks "we got enough valid data" for an accurate reading. 

 

When I met with my doctor to discuss the results (which he gave me a copy of-not the raw data, but his interpretation), he told me that I had reached REM sleep during the two naps before we stopped the test. He told me that for all intents and purposes, I have narcolepsy. But the report says "Diagnosis: Hypersomnia (ICD-9 307.44) Although this study was not adequate given lack of adequate nap trials, sleep onset REM periods were noted in the first 2 naps raising the concern for narcolepsy. Clinical correlation required." He continued to treat me as a pwn, including writing a letter excusing me from jury duty because of my narcolepsy. 

 

I have since switched to a new sleep specialist who said at my first appointment "Maybe you have narcolepsy, maybe you don't" but is treating me for narcolepsy. What I'm worried about is that I have just started applying for disability-which I know can be hard enough WITH a diagnosis. I've seen several people here say that they were sent home after their second REM sleep nap. I am wondering why some doctors would call a study with only two naps "inadequate" and some doctors will send you home after the second nap. I am just really worrying about my chances to get disability. 

 

If anyone has any insights or advice, I would greatly appreciate the feedback. Thanks!!

Leslie



#2 exanimo

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Posted 19 July 2013 - 11:34 AM

Honestly, I'm not sure why they would do that. A diagnosis of N only requires two SOREMs so it doesn't make sense that they didn't give you the diagnosis. It is probably because you only completed the 2 naps - but even if you had gone the whole test they would not have made you take the 5th nap if you had 2 SOREMs or more.

My only advice, ask the doctor. Contact him and ask him for the reason behind those discrepancies.

#3 DeathRabbit

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Posted 19 July 2013 - 05:59 PM

Yeah, after all, Doctors have oodles of patients. He could have just had a brain fart with your case.



#4 Intreble

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Posted 25 July 2013 - 11:13 AM

It wasn't a brain fart. On his part at least. I'd say I had a brain fart when I didn't ask him why the two naps were not sufficient. I'm reluctant to contact this doctor because I stopped seeing him without an explanation. That sounds pretty silly, but I have no idea if people actually tell a doctor that they don't like him/her and they would like to find a new doctor. Am I worrying for nothing? 



#5 DeathRabbit

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Posted 25 July 2013 - 03:34 PM

It shouldn't be a problem to contact him. That's pretty common. I've never exactly written a break up letter to any doctors I stopped seeing, and I have gone back and seen them later. :P   They see so many people, they probably don't remember you as anything more than a chart anyway.



#6 Intreble

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Posted 25 July 2013 - 08:22 PM

Thanks-I figured I was worrying about that part for nothing. I'm pretty sure (judging from the run-around I always encountered) I won't actually get to speak to the doctor, probably his nurse. We'll have a nice little game of telephone. :/  I'm still pretty terrified of this whole application process. My husband applied for disability earlier in the year for his anxiety (and a few personality disorders) and he was approved pretty quickly. We expected he would be denied at least once, but it went right through. I am not feeling confident that mine will be that easy. 

 

On the other hand, for so long, any time I had to fill out a job application I was always trying to hide/make excuses for my spotty work record, to be vague about college (7 years of trying but no degree), etc. It's kind of satisfying that everything I've tried to hide to find a job will actually be extremely helpful for THIS application, LOL.

 

Leslie