15 replies to this topic

[Lovemyhusband]

My husband started to see a pulmonary specialist when we thought his problem was sleep apnea. Now that we know its N should we request to see a neurologist? Or do you think it even matters? :?

[judycasper]

Now that your husband has been through the sleep tests and has been diagnosed with N, he needs to see a neurologist specialzing in sleep disorders or a sleep doctor. I see it like this, you wouldn't go to a podiatrist for help with heart problems, so why see a lung-doctor if you've been diagnosed with N?

It is very common to see a pulmonary specialist first, before the sleep tests, because apnea is such a big cause of many people's sleep problems. Of course, it is possible to have both apnea and narcolepsy!

Narcolepsy Network may be able to help recommend a neurologist or sleep doctor in your area.

[danielle]

hi! this is my first post. my daughter has narcolepsy. she was diagnosed almost 5 years ago, she was 8 when the symptoms started presenting. it took about six weeks from onset to diagnosis. she started with EDS and within 2 weeks she was falling down steps (cataplexy). she orininally was seeing a male neurologist - he is the one who diagnosed her. we saw him for 3 years and then were invited to be in a research study on provigil for children with narcolepsy. the doctor who headed the study is a pulmonologist who is (in my opinion) an expert on sleep diorders. we decided to change from the neurologist to the pulmonologist, partly because we had developed such a great relationship with her during the research study (it lasted for a year), and partly because my daughter was seeing a male doctor and decided she wanted to see a female. my daughter loved the neurologist but he was male and that became an issue when she started puberty. anyway, our doctor (the pulmonoligist) is a wealth of knowledge on narcolepsy and any sleep diorders. if I were you I would find out how confident the pulmonologist is in treating your husband's N, does the doctor have any other patients with narcolepsy? and then make your decision to change.

hope this helps!

[Lovemyhusband]

Thank you for your input. I am researching the doctors in my area to see who is the "best" in sleep disorders. Hopefully I will find one soon.

[KFoster]

I have not had the best experiences with neurologists. From terrible to not bad, to good. However the Pulmonologists seem much more knowledgable on Sleep Disorders and new treatments. They also treat you like human beings with feelings. In other words, they really feel that sleep disorders are legitimate and they dont feel intimidated by treating them.

[Lovemyhusband]

Thank you for your input. I am still in search of the "best" in our area. I have yet to find a sleep specialist so we will continue to see the pulm until I find someone better.

[greatbig47]

Okay, so I may see things a little differently.

I understand the relationship between a doc and his/her patient is an element of importance. The right doctor can save your life. The wrong one can end it. You might be able to be complete "buddies" with your doctor, but if he's pediatrist your best not asking him why you are falling down when you laugh.

PLEASE avoid steriotyping doctors by what the specialize in. The notion that all nuerologist have ugly bedside manners is so wrong. I'm lucky enough to have a nuerologist that is AWESOME! I also had "Shrinks" that tried to fix my narcolepsy with antipsycotics.



The main point I'm after here is this...Get rid of the idea that you have to choose one or the other. All your doctors should work in concert together.

If there is a "doctor steriotype" it is that whatever is causing a condition must be something that can be rectified by what they specialize in. I pulmonary/heart specialist will look for answers to solve your problems by looking at your heart. A nuerologist will look to solve problems with your nervous system. If you bring in a dermatologist,, he'd probably look for a skin reaction that's causing you to be so sleepy.

As patients, we have to be brave enough to ask, "Uh....what are the chances this isn't a heart issue, but a nuerological issue?". We MUST speak up and ask, "Why do I need to take this medication?".

Doctors just want to help with what they know, even if they can't help at all. I hope that a doctor's bedside manner and gender don't keep ANYONE from getting the right advice.

love and prayers!

-Stu

[Lovemyhusband]

Stu thanks for the advice. I have been fortunate enough to be exposed to doctors who are extremly reliable but have horrible bedside maners. I have no problem with a lack of personality as long as they are good at what they do.

My search for a sleep specialist is one that is going to take a bit of time. I only decided to seek out another dr when he told dh he doesn't see pwn very often, more like only twice. one being my husband. He is taking provigil but seems like every day it gets closer to what it was like before meds. He is (I think) building a tolerance for the drug. This is going to be a life long battle that I would like to make sure the person who treats dh is the best.

BTW, are you going to the mini conference in April?

[greatbig47]

Clara,

It seems like somedays my provigil doesn't pack the same punch it used to. Today I was with my inlaws at a funeral about 2 hour distance from my house, and I forgot my meds. Bad move, I know. But I discovered something...

6hr energy drink + an energy/vitamin drink worked better that the provigil! I didn''t need a nap all day! Of course I have to remember that the way it affected my body might not be the same if I do it again tomarow, but if I wasn't blessed with insurance, it would be less $ than the provigil.

And it reminded me of the provigil I originally fell in love with

Another trick I've found useful is to go without my provigil if I can on some days. Of course there are many days when that just would NOT happen! But if I get a good day, and I don't need it to get out of bed and function, I go for it! I've found that this keeps the provigil acting good when I need it.

Since provigil doesn't maintain a level through out the day, I can get a way with it. It's not like the meds that I take for my cataplexy (that needs to "build up").

I'm definately going to try my best to make it in April! I'm hoping to take some pics for NN!

-Stu

[bagpuss]

HI GUYS I FOUND TAKING A FEW DAYS OFF FROM MY MEDS ALWAYS HAS A NEW KICK AFTERWARDS. NO ITS NOT A NICE FEW DAYS BUT IT,S WORTH IT.......... YOU HAVE TO GO TO THE CONFERENCE IN APRIL.AS AN ENGLISH T.V COMPANY ARE COMING OVER TO FILM IT(SO I FOUND OUT FROM THIS SITE)SO IVE EMAILED THEM AND TOLD THEM HOW GREAT YOU GUYS ARE .THEY HAVE BEEN BACK IN TOUCH AND WANT TO TALK TO ME.HA HA HA .A PLANE TICKET WOULD OF BEEN BETTER

[lnwilson]

I have narcolepsy, and have an incredible neurologist in Denver, Colorado who I've been seeing since I was diagnosed about 5 years ago. The problem is that I moved to Southern California almost 4 years ago, but still fly back to Colorado (where I have family) to visit my neurologist! Does anyone have a narcolepsy specialist in the Los Angeles area that they highly recommend?

I would appreciate any referrals! I'm hesitant to just randomly pick a doctor out of a list.

Thanks!

[Lovemyhusband]

I have narcolepsy, and have an incredible neurologist in Denver, Colorado who I've been seeing since I was diagnosed about 5 years ago. The problem is that I moved to Southern California almost 4 years ago, but still fly back to Colorado (where I have family) to visit my neurologist! Does anyone have a narcolepsy specialist in the Los Angeles area that they highly recommend?

I would appreciate any referrals! I'm hesitant to just randomly pick a doctor out of a list.

Thanks!

Wow I hope you have lots of frequent flyer miles .

Have you tried interviewing dr in your area? How about asking your current dr to call on collegues to see if they can recommend a dr in your area.

Good luck!

[Toph4er]

My sleep doctor is a pulmonologist and he is absolutely amazing. I'm now volunteering in his sleep clinic

[rantboy]

Okay, so I may see things a little differently.

I understand the relationship between a doc and his/her patient is an element of importance. The right doctor can save your life. The wrong one can end it. You might be able to be complete "buddies" with your doctor, but if he's pediatrist your best not asking him why you are falling down when you laugh.

PLEASE avoid steriotyping doctors by what the specialize in. The notion that all nuerologist have ugly bedside manners is so wrong. I'm lucky enough to have a nuerologist that is AWESOME! I also had "Shrinks" that tried to fix my narcolepsy with antipsycotics.



The main point I'm after here is this...Get rid of the idea that you have to choose one or the other. All your doctors should work in concert together.

If there is a "doctor steriotype" it is that whatever is causing a condition must be something that can be rectified by what they specialize in. I pulmonary/heart specialist will look for answers to solve your problems by looking at your heart. A nuerologist will look to solve problems with your nervous system. If you bring in a dermatologist,, he'd probably look for a skin reaction that's causing you to be so sleepy.

As patients, we have to be brave enough to ask, "Uh....what are the chances this isn't a heart issue, but a nuerological issue?". We MUST speak up and ask, "Why do I need to take this medication?".

Doctors just want to help with what they know, even if they can't help at all. I hope that a doctor's bedside manner and gender don't keep ANYONE from getting the right advice.

love and prayers!

-Stu

Well said Stu. I wouldn't have been so diplomatic. To me 99% of doctors are mere mechanics not healers with very few exceptions.

[rantboy]

My husband started to see a pulmonary specialist when we thought his problem was sleep apnea. Now that we know its N should we request to see a neurologist? Or do you think it even matters? :?

the title in "which doctor" should be spelled Witch doctor

[Kimberly]

Since Sleep Medicine is not something that doctors can "major" in at medical school (like Cardiology, Internal Medicine, or Neurology), there are doctors of various specialties that also hold Sleep Medicine certifications.

The most common seem to be Pulmonologists (due to the high number of people with sleep apnea), but there are also Neurologists, Psychiatrists, and even Cardiologists are getting into the game now too since certain sleep disorders (like apnea) can increase the risk of cardiac events.

Since N is a brain-related disease, it might make sense to try to see a Sleep Physician that is a Neurologist, but if you love your Sleep Doc and the treatment you are getting works for you, then it doesn't really matter what their specialty is.

I started off seeing a Sleep Doc that was a Pulmonologist, because that's who I was referred to by my PCP and nobody else I knew had a sleep medicine doctor. He was OK, office was very assembly-line, but he got me the right tests and got me on Provigil, then added Ritalin when I had breakthrough sleepiness. So the protocols seemed right. Then he prescribed Elavil for my cataplexy, which is a very old medicine and there are more current ones with less side effects.

Once I developed some other health issues, I started seeing a Psychiatrist for medication management (most are trained in clinical pharmacology). He suggested that I see a Neurologist Sleep Doc, and actually recommended one. Now that I've seen the Neurologist, his practice seems to work more smoothly and individually and I prefer to see him. He switched me to Effexor, a more current anti-cataplectic. But you could get the same experience with a Sleep Physician from any medical specialty.

You can check with the American Board of Sleep Medicine to see if your sleep physician is a Diplomate of theirs. http://www.absm.org Unfortunately they are listed by name, not by state. There is also the American Academy of Sleep Medicine, which certifies sleep labs and any lab is required to have a certified sleep specialist onsite. http://www.aasmnet.org lists them by zip code.

I think bottom line, it's whoever gives you the care and treatment that work best for you.