Well it's the same with Diabetics. My Hubby is Diabetic and all they can do is treat it, they can't make it go away.

All that really can be done is to support research and raise awareness. I plan on getting into research myself (being still in college), with every intention of researching narcolepsy.

Fleece...totally agreed. I've made it my purpose to learn all I can and share, share, share!

I would just like to pose a question for reflection.

Both doctors and teachers' livelihoods are based on providing a service to people, and they are able to provide this service based on extensive training and education.

How would you/we/one feel about a child's teacher if s/he had the same attitude/demeanor/disposition/courtesy/listening skills/empathy as any of your/our/one's doctors?

Just a thought.

That's a very good point Alisha. I totally understand that doctors don't have a magic wand. I do however expect them to do their up most to research the most suitable treatment for my condition. So many doctors just reach for the prescription pad without even bothering to look into lifestyle changes, nutrition, etc. Why? Probably because you're on the clock, and time is money, right??

It's often their attitude that really bugs me. I don't think it's that difficult to show a little empathy, and to take a moment to really talk things through with a patient. Instead of trying to get you out of the door a.s.a.p.

So many doctors seem to be so focused on relieving you of your money that they actually forget that patients are real people.I also dislike the God complex many doctors (especially surgeons) develop as they get older. They should be receptive to input from patients, they should use the internet, they should not assume they know everything.

We do have to take responsibility for our own health...advocating for ourselves, researching and adapting healthy life styles...I'll bet my own GP hasn't done any research since my diagnosis...though I had been seeing him for years...I think they still believe that it is so rare (a zebra) so they have other priorities. I feel for those people who for what ever reason, depression, cognitive problems, even personality aren't able to fight for their needs. I know many of those people attend mental clinics for years-diagnosed with chronic depression...we know the suicide rate is high for diagnosed PWN...I can only imagine the rate for non-diagnosed PWN....thinking of deleting this post because is is such a downer...but I won't...touching these thoughts helps me find the energy needed to do some advocacy. I am on the committee for the next NN conference where advocacy will be a major theme. They are planning to include pre-conference lobby day. I participated in a lobby day in DC years ago for domestic violence-(as a professional working with victims).

I know when I told the sleep dr at my consult I had been diagnosed with chronic depression years ago, she raised her eye brows at me. I have a feeling that's what she thinks this all is and the pain meds I was taking.

I ran into the same problem with my Neurosurgeon for my back. I had to travel to Chicago to find someone that would at least talk to me about an artificial disc implant. My dr was still under the assumption that most were taken out and they weren't any good. I found out I wasn't a candidate for the disc, but at least I was ready to fight to get it, even with my insurance, if I was.

daughter jr year was so bad--she needed some extra stuff --they refused to give what was needed saying she was a problem child and (repeated it in front of the judge) they threaten to have her taken out of the home ---we had to get an lawyer and sued the school-- they turned around and sued us--they had to pay for 4 years of private school of her choice---now if they would of done what was needed in the first place it would not of cost them 13.000 a year + lawyers fees for their stupidity--love to sue for all the time- wasted years- money- useless pills -Drs and Shrinks and emotional stress -pain and suffering including all family members- all the gas driving to and from the other side- they would have to pay for the Drs of our choice and test that are needed and a specialist who a nar shrink for ever how long is needed

Reflection doctor/ teacher:

I think the amount of time with the student/ patient is the key.

For a teacher to make a good evaluation of a students needs it may take 2 weeks, months or one quarter.

The doctor on the other hand had maybe two15 min. appointments with the patient.

In either case a relationship needs to develope.

Symara, Wouldn't it be great if someday a doctor raises her eyebrows when a patient reports chronic depression because she thinks, "I wonder if it could have been narcolepsy all along".

Yes, Symara!

Marilyn,
I thought the same thing when I said it, I've either always slept too much or not enough, insomnia in HS and College. But it's never been as bad as it is now, but I never told anyone until now. I told her that, and it's like she wasn't listening, she thinks I'm just not getting enough sleep (which is true at the moment cuz of coming of pain meds) or I have sleep apnea. It's very frustrating.

Oh and she knows everything cuz she used to work in ICU. Huh? She said it was the pain meds cuz she saw how people reacted in ICU. Ummm, aren't they on pain meds 24-7 in ICU?

I was very dismayed when it came time to discuss treatment - the only medications my doctor suggested I had already tried, and they didn't work. So basically, I'm out of luck!

I've been having problems with my drs over my Hashimotos Thyroiditis.

Was dx'd 61/2 yrs ago and they put me on a low dose of synthetic thyroid and kept me there.

Problem is, I still have severe symptoms of hypothyroid. But because me chemical levels are in the low-normal range, they try to tell me that its not my thyroid causing the hypothyroid symptoms! WTF?

Been fighting it hard lately. Maybe my new dr will listen.

i realize that we all need to do what we ourselves can to improve our health, diet and lifestyle are important. But sometimes the body does not do it's job just right, like with diabeties, PMDD, thyroidism etc. Sometimes a medication is needed to put the body chemistry right again. This just seems to be an illness that needs a little more help then we personally can give, no matter how hard we try, and i do believe that many of us have tried our hardest to cope with this. Drugs are useful when used with discretion. Just my opinion.