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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

A MyNarcolepsyTeam Member said:

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 21 days ago
A MyNarcolepsyTeam Member said:

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 29 days ago
A MyNarcolepsyTeam Member said:

Exactly! No two narcoleptics are going to present the same way, so why 8 minutes is the "standard" I'll never know. I understand that a lot of folks probably will knock out within that time, but this disorder seems to run more of a non-linear spectrum than the molded 8 minutes dictates.

posted 29 days ago
A MyNarcolepsyTeam Member said:

I fully understand. It is really unacceptable. Unfortunately, I believe MSLT tests are not always reliable. It's true that GENERALLY narcoleptics fall asleep quickly and go straight into REM sleep, but I believe there are also times when this doesn't necessarily happen. I find now that I am learning to manage it that it worsens when: vitamin d levels go down, there is an infection or cold, I get stressed or even with hormonal fluctuations. That's what happens to me and I know full well that in those circumstances an MSLT test would show different results to other days. I think your best bet is to get a lumbar puncture. I had one, but I'm still waiting for the results (in the meantime, they still don't know if it's narcolepsy type 1, type 2 or hypersomnia) I fell asleep during all MSLT tests (they were done twice, two days in a row, I fell asleep quickly, less than 8 mins, but did not go straight into REM sleep), so the results were ambiguous. But I had multiple awakenings during REM sleep with possible hallucinations during the night. But to get back to the original point, whether yours or mine is hypersomnia or narcolepsy still doesn't alter the fact that it impacts our lives and that symptoms should be taken seriously! In the meantime, I think a lumbar puncture is your best bet. Good luck!

posted 29 days ago
A MyNarcolepsyTeam Member said:

It's absolutely aggravating. I've had two polysomnograms and MSLT and STILL cannot get diagnosed. I just don't go to sleep for the nap studies when they want me to, yet I still struggle at work and on the weekends because I cannot stay awake once or a few times during the day. Because I don't fall asleep within the 8-minute study parameter I cannot get help for something that is impacting my daily life. The first doctor I went to was a neurologist. He diagnosed me with idiopathic hypersomnolence, but because my dad had narcolepsy he believed that is what I actually have also. I took Provigil at the highest dose at one point and still fell asleep just as easily as when I wasn't taking it. I stopped taking it because the co-pays for it were high. Fast forward to now. I couldn't get a diagnosis from a pulmonologist. I was sent there because I snored. Again, no sleep apnea and again no falling asleep within 8 minutes for the MSLT. As I waited to lay down again between the naps I fought to stay awake. When I went for a follow-up he said that he could not diagnose me with anything because I didn't fall asleep within the required 8 minutes, but, thankfully, he didn't deny that I was having issues and didn't try to explain them away. Yet, when I looked at My Chart he had made a diagnosis of hypersomnia. Still, I cannot get help because of the failed MSLT. I want to get a lumbar puncture also to finally get some kind of answers to this nonsense. Never feeling awake yet sleeping the entire night is not normal. I have the classic tetrad of N1 symptoms. There is just no bending the rules for the MSLT with some doctors. And others, if you can find them, are ready to diagnose you based on just your symptoms. It is unbelievable how much frustration we have to go through.

edited, originally posted 29 days ago
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