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The Right Doctor


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#1 trying_to_cope

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Posted 25 November 2012 - 11:17 AM

Someone had said in a different post about finding the right kind of doctor and that a pulmonologist was not a good one to have. Around where I live I have only been sent to two different pulmonologists, my mother's neurologist even referred me to my newest one. I'm new to all this so any advice will be appreciated. Thanks in advance.

#2 Hank

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Posted 25 November 2012 - 03:15 PM

Someone had said in a different post about finding the right kind of doctor and that a pulmonologist was not a good one to have. Around where I live I have only been sent to two different pulmonologists, my mother's neurologist even referred me to my newest one. I'm new to all this so any advice will be appreciated. Thanks in advance.


The best doctor for a person with Narcolepsy is a Sleep Medicine Specialist. This is generally a Neurologist who is fellowship (additional 1-3 years training beyond residency) trained in Sleep Medicine.

Several other specialties can received Board Certification (passed a test they studied for or took a course or seminar) in Sleep Medicine: Pulmonary Medicine, ENT (Otolaryngology), Dentistry, Neurology.

Board Certification in Sleep Medicine does not come remotely close to the expertise of a Sleep Medicine Specialist.

Those physicians who are Board Certified in Sleep Medicine, like your Pulmonologist, primarily focus on Obstructive Sleep Apnea, which is common and relatively straight forward to treat. This makes a nice addition to their Pulmonology practice where they treat lots of people with respiratory problems.


Narcolepsy is a completely different ball game than Obstructive Sleep Apnea, which is common. It is likely your Pulmonologist has never treated someone, or only a few, with Narcolepsy.

Ultimately, it is your call who you decide to be your doctor. Doctors tend to treat patients who go to them, doctors tend to see themselves as capable, and doctors tend to be confident in their decisions. Problems begin when you trust a physician more than their expertise to treat you deserves.

You may want to consider a second opinion with a Sleep Medicine Specialist and see if there is a difference before making a decision.

#3 trying_to_cope

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Posted 25 November 2012 - 06:47 PM

The best doctor for a person with Narcolepsy is a Sleep Medicine Specialist. This is generally a Neurologist who is fellowship (additional 1-3 years training beyond residency) trained in Sleep Medicine.

Several other specialties can received Board Certification (passed a test they studied for or took a course or seminar) in Sleep Medicine: Pulmonary Medicine, ENT (Otolaryngology), Dentistry, Neurology.

Board Certification in Sleep Medicine does not come remotely close to the expertise of a Sleep Medicine Specialist.

Those physicians who are Board Certified in Sleep Medicine, like your Pulmonologist, primarily focus on Obstructive Sleep Apnea, which is common and relatively straight forward to treat. This makes a nice addition to their Pulmonology practice where they treat lots of people with respiratory problems.


Narcolepsy is a completely different ball game than Obstructive Sleep Apnea, which is common. It is likely your Pulmonologist has never treated someone, or only a few, with Narcolepsy.

Ultimately, it is your call who you decide to be your doctor. Doctors tend to treat patients who go to them, doctors tend to see themselves as capable, and doctors tend to be confident in their decisions. Problems begin when you trust a physician more than their expertise to treat you deserves.

You may want to consider a second opinion with a Sleep Medicine Specialist and see if there is a difference before making a decision.


Thanks for the advice I really appreciate that. Where I live though it seems like there aren't any neurologists that have the sleep education, at least that I have found. Maybe I just need to dig deeper. Thanks again.

#4 DeathRabbit

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Posted 27 November 2012 - 10:49 AM

Hank's advice is correct. Pulmonologists, in my experience, know jack *BEEP* about Narcolepsy. My pulmo sleep guy told me Xyrem wasn't an option because it was a sedative and would make me sleepy. What an idiot!!! 5 minutes of research on the internet and I think I knew more about Narcolepsy than he did. My first clue to get out of there was when I talked with one of his nurses and found out she had N for 10 years and the guy hadn't been able to find a treatment for her. That's pretty sad if you can't even help your own people. Pulmonologists are for OSA only! Anyone for N needs a neuro or psych background, something that will mean they have mroe than just a cursory knowledge of brain chemistry.

#5 klperkins67

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Posted 06 December 2012 - 09:58 AM

I think I"m having this exact same issue. My insurance, Tricare, referred me to a new Dr for a consultation and evaluation my symptoms before I could get my Nuvigil rewritten. I had a PSG and MSLT done in Jan 2010 and was diagnosed with narcolepsy without cataplexy. This new Dr is convinced that I have sleep apnea even though my PSG showed 0 indications of it. He's basing it off of me not having a family history even though I told him my mom has sleep paralysis, no cataplexy, no hallucinations, no sleep paralysis myself, etc. And yet all the questions he asked regarding sleep apnea were all No's. But he didn't seem to care. He was just hung up on the fact that I didn't enter REM sleep during my MSLT even though it says on my results I was on Zoloft at the time which is a known REM suppressant. He wants me to redo the tests which I don't want to do because it was a horrible experience the first time around and I've been treated before and I know what works for me.

The kicker here is now, after reading this post, realize he may not be qualified to deal with my condition. His office is called "Southeast Lung Associates." Could this be why he immediately went to a diagnosis of sleep apnea? If he primarily treats people with it, then he wouldn't have been exposed to many narcolepsy patients. It seems like he primarily treats military with sleep apnea to me just from sitting in the waiting room. My previous Dr was "Presbyterian Sleep Medicine" in NC.

#6 MINItron

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Posted 07 December 2012 - 08:10 AM

I think I"m having this exact same issue. My insurance, Tricare, referred me to a new Dr for a consultation and evaluation my symptoms before I could get my Nuvigil rewritten. I had a PSG and MSLT done in Jan 2010 and was diagnosed with narcolepsy without cataplexy. This new Dr is convinced that I have sleep apnea even though my PSG showed 0 indications of it. He's basing it off of me not having a family history even though I told him my mom has sleep paralysis, no cataplexy, no hallucinations, no sleep paralysis myself, etc. And yet all the questions he asked regarding sleep apnea were all No's. But he didn't seem to care. He was just hung up on the fact that I didn't enter REM sleep during my MSLT even though it says on my results I was on Zoloft at the time which is a known REM suppressant. He wants me to redo the tests which I don't want to do because it was a horrible experience the first time around and I've been treated before and I know what works for me.

The kicker here is now, after reading this post, realize he may not be qualified to deal with my condition. His office is called "Southeast Lung Associates." Could this be why he immediately went to a diagnosis of sleep apnea? If he primarily treats people with it, then he wouldn't have been exposed to many narcolepsy patients. It seems like he primarily treats military with sleep apnea to me just from sitting in the waiting room. My previous Dr was "Presbyterian Sleep Medicine" in NC.


This doctor sounds like a quack. I would recommend finding another doctor in the area that accepts Tricare. Just because they gave you a referral to this one doesn't mean he is the only one available, and if you ask they will change your referral. If you go on the website for your Tricare region you can search for sleep specialists in your area. It is important that you are your own advocate in this.

#7 kyethra

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Posted 15 December 2012 - 04:57 AM

Someone had said in a different post about finding the right kind of doctor and that a pulmonologist was not a good one to have. Around where I live I have only been sent to two different pulmonologists, my mother's neurologist even referred me to my newest one. I'm new to all this so any advice will be appreciated. Thanks in advance.


You might have to travel. It is essential to find a skilled and experienced neurologist. I started out seeing a pulmonologist and he told me I was only his third narcoleptic and by far the youngest and he just didn't seem to know that much about meds. When I asked about Xyrem he said I wouldn't want that because it meant once one was on that one was usually always on it. Um, I was already always on provigil and he put me on a sleeping pill, etc. So we went up to a big city for a while. I also tried another local Neurologist when I wanted to touch base with one due to side effects from the med I was on for period limb movement and he didn't know what xyrem was. Nope, if I have to explain my condition and its treatment to you then you are not the doctor for me. I did find a local neurologist who has sufficient experience and so forth.

I have switched other doctors in the past too. If I feel my doctor doesn't take me seriously, I am switching. If my doctor's treatment plans and my thoughts on treatment don't mesh, I'm switching. Now, I do listen to my doctor. For example, I wanted to get on Ritalin while breastfeeding since i couldn't take provigil but he said no because of my blood pressure not being as nicely controlled as he would like. I don't like that, but I get that.

Once you do find a specialist that you like, ask them for recommendations for other specialists. They tend to know other good doctors.