So. Freaking. Confused.

[EmersonAilidh]

So, we had the polysomnography/MSLT on Nov. 11/12th. A couple weeks later we got a call from a nurse saying that everything was all good. They specifically told us they "didn't even warrant a follow-up." I was upset, but whatever.

 

Well, I have surgery to remove a ranula (just a harmless, albeit gross & painful, mouth cyst) on the 21st. Today they called to ask all of their questions for the anesthesiologist or whatever. Any history of seizures, any heart problems, etc... When I told them that the only medication I was taking was Nadolol (blood pressure meds... prescribed for headaches), the first thing the lady asked was "Well what is she taking for her Narcolepsy??" & my Mom just went "...what?". The woman on the phone said "Ya know, the thing that makes her tired all the time?" (ha-ha) & my Mom replied with "Yeah, I know. Where does it say she has Narcolepsy?!" & the woman said "I'm looking at her sleep study results right now. It says right here that your daughter has been diagnosed with Narcolepsy."

 

Um. EXCUSE ME?! A doctor is going to just fail to mention to a fifteen year old girl who's about to start driving that she's Narcoleptic?! That's a TAD important. At first I was like "Well, she could have been looking in the wrong file" or something, but she had already asked me about all of my previous procedures. Unless someone who has also had a ranula removal, appendectomy, EKG, MRI, & EEG, also just so happened to diagnosed with Narcolepsy on the same day as me & it just so happened to get stuck in my file... Doesn't sound likely. I'm pretty unlucky, but come on.

 

My stepdad is going to call tomorrow just to be like "What the ####?", but how do we even go about this??? I am so confused!!! Please help, cyberfamily.

[peglem]

So, we had the polysomnography/MSLT on Nov. 11/12th. A couple weeks later we got a call from a nurse saying that everything was all good. They specifically told us they "didn't even warrant a follow-up." I was upset, but whatever.

 

Well, I have surgery to remove a ranula (just a harmless, albeit gross & painful, mouth cyst) on the 21st. Today they called to ask all of their questions for the anesthesiologist or whatever. Any history of seizures, any heart problems, etc... When I told them that the only medication I was taking was Nadolol (blood pressure meds... prescribed for headaches), the first thing the lady asked was "Well what is she taking for her Narcolepsy??" & my Mom just went "...what?". The woman on the phone said "Ya know, the thing that makes her tired all the time?" (ha-ha) & my Mom replied with "Yeah, I know. Where does it say she has Narcolepsy?!" & the woman said "I'm looking at her sleep study results right now. It says right here that your daughter has been diagnosed with Narcolepsy."

 

Um. EXCUSE ME?! A doctor is going to just fail to mention to a fifteen year old girl who's about to start driving that she's Narcoleptic?! That's a TAD important. At first I was like "Well, she could have been looking in the wrong file" or something, but she had already asked me about all of my previous procedures. Unless someone who has also had a ranula removal, appendectomy, EKG, MRI, & EEG, also just so happened to diagnosed with Narcolepsy on the same day as me & it just so happened to get stuck in my file... Doesn't sound likely. I'm pretty unlucky, but come on.

 

My stepdad is going to call tomorrow just to be like "What the ####?", but how do we even go about this??? I am so confused!!! Please help, cyberfamily.

Well, call and check, but it may just be the reason that was cited for the sleep study in paperwork. I know when I look at my daughter's medical files, sometimes dx's are written down to order tests- like my daughter does not have epilepsy, but it has been noted in her file when ordering tests to check for it.

[thereishope]

I agree with Peg. It's also sometimes a billing thing. They need to put something down. But...weren't you concerned you were Narcoleptic since it runs in your family? Did they tell you that you weren't after the sleep study?

[kimballot]

Call and request your report from the sleep center. You have a right to your report. You may need to pay for the copies and you will likely need to sign a form. Once you get the report then you can call the doctor for a follow up visit if there is something in there you don't understand (like you have narcolepsy and no one noticed).

[MichaelTampa]

My goodness, yes, a bit perplexing... sometimes these doctor/medical types do things that can just drive you crazy! After reading your post, didn't have any good thoughts other than obviously you can't be so sure how much to rely on the office that handled that test.

 

Yes, very good thought by Peg, MAYBE that's what it is. I dunno, I've had plenty of bills with plenty of diagnoses, for sure, yes, but I've never had anyone with a summary from all that, even at these outpatient centers that do stray procedures like you have scheduled for the 21st. So, let's hope that's it, I wouldn't assume it though.

 

I think as far as getting down to the truth, I like kimballot's suggest as a start.

 

I do think you want to give that office that may have mishandled this a chance to explain how things went this way, from there perspective. I would suggest carefully noticing how they explain it, how apologetic/sincere their explanation really is. I say this, because, some patients with difficult situations can get into situations where their doctors are really just humoring them and not taking their situation seriously, so, I think what you want to find out is, how seriously that office really is taking your situation. You want to know if you can trust them going forward.

 

Good luck!

 

Michael

[EmersonAilidh]

Stepdad called up there this morning, they said they'd call back Monday. Dunno what exactly was said. We already have all of my medical records as of July of this year! Suppose we need to re-up, hah. Starting with the sleep study.

This is the same hospital where the doctor wrote "Has Dystonia" "Has Dystonic posture" "Indicative of Dystonia", etc... all over my records & no one told me until I saw the papers about five years later, so I don't know how to feel about it.

 

Vickie ~ Most definitely. Dad is pretty bad Narcoleptic. :/