Connect with others who understand.

sign up log in
Resources
About MyNarcolepsyTeam

Connect with others who understand.

sign up log in
Resources
About MyNarcolepsyTeam
Real members of MyNarcolepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Can Someone Please Help Me Understand Why Narcolepsy Takes So Long To Diagnose? What's Wrong With Our Society?

Can Someone Please Help Me Understand Why Narcolepsy Takes So Long To Diagnose? What's Wrong With Our Society?

Why on earth does narcolepsy take so long to diagnose? I've been trying hard to find some sort of logical, rational explanation, some sort of justification, but I can't find it. I know it's not a well-known disease, I know we can't expect people to know there's some sort of neurological issue with lack of orexin and an autoimmune reaction behind our symptoms, but although friends, family, doctors may not know the exact cause of the symptoms, I think they know and can see we are not well and are… read more

posted July 11
A MyNarcolepsyTeam Member

It is sad to hear that for some the diagnostic journey is no shorter today than it was for me 50 years ago. The first doctor I saw said that narcolepsy was a rare disease so I probably didn’t have it! It was twenty years before I got a confirmed diagnosis! That was in the days before the current sleep studies, but I fortunate enough to have been on the west coast where the first sleep clinic had been established, at Stanford I believe. They did have me wear a Holter monitor, but the diagnosis was primarily based on symptoms. My experience with doctors in general is that a precious few are intuitive, will listen to the patient’s experience of their own body, and are willing to think outside the box, but the majority are bound to the limitations of their scientific training. I have run into the same problem with getting hypothyroidism properly treated; blood tests often say you are fine while your body is screaming “help me!”

posted August 26
A MyNarcolepsyTeam Member

"Can Someone Please Help Me Understand Why Narcolepsy Takes So Long To Diagnose? What's Wrong With Our Society?"
I really don't know why there is such a long drawn out process. I do believe that it is a two fold problem. Narcolepsy is not a in your face everyday disease. Secondly as it was stated on a previous post...it's not a big money maker. Besides doctors are not all knowing, although Some think they are, but they are just "practicing physicians. "
This second part to the question, "What's wrong with our society? "
Our society prefers to take the easy way out. It is easier to call someone lazy, depressed, overly tired, insomniac etc.. then to go through the long drawn out process of finding the correct answers. It's always easier to float downstream. I want to refer to something that my physician said when I first came to him. "He probably don't have narcolepsy, you're just excessively tired." When I press the issue, he agreed to have you take the blood test. After the blood, test, came back positive he sent me for a second sleep study.
Our society, friends and family find it easier to explain our behavior as "lazy" because they're not the one dealing with what's the situation.

If your not getting help don't give up ask more questions, do more research, find better doctors.

posted September 21
A MyNarcolepsyTeam Member

I have a new psychiatrist after being diagnosed with treatment resistant depression. That should be a red flag. She put me on Adderall. It worked really well at first. I told her I can actually stay awake a whole day! That’s when it clicked for her.

posted July 20
A MyNarcolepsyTeam Member

Ok first doctors mainly use their training and work experience to diagnose you. If I learned anything from this forum people with narcolepsy have multiple issues. Second the symptoms are hard to understand how bad they are. Nothing is oozing, decaying, and your not flopping on the ground. So your sleepy what’s the big deal. They are sleepy too, but not the same way. Even after you explain it in great detail your looked at like your a baby. So this goes with all problems don’t blindly follow the doctor. Ask and test. If your give a drug and it doesn’t fix you don’t just keep taking it challenge the doctor. I’ll give you an example i once had a truck. My knee was giving out. The first thing the doctor says is your fat loose weight. I did and no change. Loose more. I started keeping a log and I found that I was dragging my leg when I got out of my truck. Doctors are not gods they are just people who care and are good at what they do but are limited by life and knowledge.

posted July 12
A MyNarcolepsyTeam Member

I get what you are saying. But remember, doctors "Practice" medicine. It is not an exact science. And, what works for you may not work for me. Some diseases and conditions can look like others. Until we develop the triquarter from Star Trek, we have to use what we have to diagnose! No always right the first try.

posted September 19

Related content

View all
Ok Was It A Shocker Being A Adult Finding Out You Had Narcolepsy?
A MyNarcolepsyTeam Member asked a question 💭
Did Anyone Else “diagnose” Themselves First?
A MyNarcolepsyTeam Member asked a question 💭
Has Anyone Turned To Illigal Drugs To Try To Stay Awake
A MyNarcolepsyTeam Member asked a question 💭
Already a Member? Log in