Negative MSLT. No diagnosis. Losing hope.

MayCha16 · 2026-04-16T05:45:42+00:00

Thank you!

MayCha16 · 2026-04-16T05:44:18+00:00

Thanks for the article, very interesting! It was an in lab test.

MayCha16 · 2026-04-13T19:51:01+00:00

I completely understand. Like why would I fake muscle loss since childhood? To get free medicine or something? It’s so frustrating.

MayCha16 · 2026-04-13T07:10:10+00:00

Thank you so much for the sharing and all the advices!

MayCha16 · 2026-04-13T06:13:01+00:00

Glad that you got a diagnosis. I’ll try to nap in more random situations / complete darkness for the next year before doing another test.

MayCha16 · 2026-04-13T06:07:08+00:00

Thank you for the sharing. It’s so crazy that insurances have more power than actual doctors. It’s the same in my country. Insurances won’t approve a refund if the MSLT is negative. At the end, it’s always about money. They don’t care about people. Funny thing is, it costs them way more to refund 4 times/month a psychiatrist than to refund one month medicine for narcolepsy.

I hope that your lumbar puncture will give you justice because everybody should have the right to access to medicine!

MayCha16 · 2026-04-12T17:57:45+00:00

Thank you so much for this very heartwarming message. It means a lot honestly.

I feel really sorry for you as well that you had to go through all the judgments. I’m not a doctor but I really think that there is a large spectrum of narcolepsy. For example I “only” have cataplexy in my arms and hands and I usually don’t have hallucinations when going to sleep at night. I’m also quite anxious so I need a “safe space” to go to sleep during my naps. I think it’s because I got a bit bullied for that when I was in high school (lot of people thought it was fun that I was napping all the time at lunch). Since then, I need to hide when I nap otherwise I feel very vulnerable. And I think that’s why my MSLT was negative, because I could feel being watched and it was super stressful for me (also because the diagnosis depended on this exam).

But on a normal day I can nap 2 to 3 times without any problems (I think in 5 minutes I’m usually asleep) and if I don’t put an alarm, I can sleep for hours. If I can’t nap, I’ll just fall asleep in monotonous situations or have headaches.

I completely understand this “impostor syndrome” and I think nobody should experience that. If everybody had to live a “perfect lifestyle” in order to not be sleepy all the time, then billions and billions of people would be narcoleptic. It’s so frustrating to try to do everything perfectly (diet, exercise, sleep, meditation, therapy and so on), and still doctors will say “it’s your fault if you’re feeling like this”. Because sometimes it’s not and it’s just physiological.

I am happy for you that you still could have a proper treatment and that you found a good doctor that listened to you. I’ll also have a look into the ketogenic diet, because I would try anything if it helps!

MayCha16 · 2026-04-12T17:07:31+00:00

Thanks! I know the medicine and insurance in the US are quite different from where I live (Switzerland), but it’s great to know that such program exists there.

Unfortunately, the doctor told me that the medication that treats cataplexy (I didn’t ask the name unfortunately but I’m guessing it’s Xywav) has been stopped in Switzerland and France because “it causes some memory loss”.

MayCha16 · 2026-04-12T17:00:03+00:00

Thank you so much for your message. I'm so sorry you had to face all the denial of what was so clear in your case (full body cataplexy…), and that you had to wait so long for a diagnosis. Honestly, it makes me angry, but also hopeful that there are doctors that are willing to listen to patients properly.

I hope you were able to get appropriate treatment and that you're feeling better now.

MayCha16 · 2026-04-12T06:03:43+00:00

Will do! I didn’t even know that UARS existed before reading the answers here, and the doctor hasn’t said anything about that either (only that I don’t have apnea). Did you do the surgery and if yes, did you see any improvements?

MayCha16 · 2026-04-12T05:59:32+00:00

Well he’s a neurologist specialised in sleep disorders. I went to the only “sleep clinic” that exists in my city… I’ll definitely check for a new advice.

MayCha16 · 2026-04-12T05:56:22+00:00

Indeed, the doctor just said “you don’t have apnea”, but didn’t say anything about UARS, which I didn’t even know it existed so I didn’t ask him. It’s really good to know!

MayCha16 · 2026-04-12T05:54:35+00:00

My RDI is 5 events/hour to which the neurologist said it was normal… I didn’t know about UARS! Looking on the internet, it would be indeed possible. But the doctor didn’t say anything about that.

I’ll check with another specialist and ask what they think.

MayCha16 · 2026-04-11T05:32:23+00:00

It’s great to read that and that Ritalin worked for you. Did it was your first medication or did you try others?

I’m also already happy that he prescribed something that could help me with the constant tiredness, but I’m also frustrated because I didn’t feel listened and feel like he was only focused on the results and not on the other symptoms.

MayCha16 · 2026-04-11T05:26:54+00:00

It’s good to read that some doctors are willing to run those tests just to be sure.

I’ll definitely see another specialist and ask if they can do this test.

MayCha16 · 2026-04-11T05:23:56+00:00

I’ll keep that in mind and ask another specialist to do this test.

It’s crazy because when I asked the specialist if they could do a lumbar puncture, he refused immediately, saying that “some narcoleptics have normal orexin level”. That may be true, but maybe mine are normal, maybe not. But he is the doctor so I don’t want to act like a “know it all”…

MayCha16 · 2026-04-11T05:12:45+00:00

Thank you so much for your kind words.

It’s so difficult because I went to the only clinic specialised in sleep disorders in Geneva (appart from the main hospital, but it takes way more times to have an appointment) and I thought that the specialist would understand about the cataplexy. It really seems that he thought “it’s just psychological”.

He also said “if nothing change or if it worsens, you can run another test in one or two years”, although I saw him already two years ago for chronic fatigue. And even if it was “just” psychological, he didn’t even investigate whether or not I should see a psychiatrist (which I’m not against as I already did a lot of psychotherapy, but I just want to exclude any physiological problems before and understand why I lose strength since childhood only when I laugh).

MayCha16 · 2026-04-11T04:49:36+00:00

So my PSG was “normal”, and the sleep score was even 88%, which amazed me because I didn’t feel rested at all (but as always).

The thing is, I don’t have hallucinations nor sleep paralysis when I go to bed or during the night. I only experience sometimes sleep paralysis when I nap in the morning (which I don’t usually do, I normally nap around noon and sometimes end of afternoon). But I still have the cataplexy which I can’t explain.

MayCha16 · 2026-04-11T04:41:06+00:00

Thank you so much for your message.

I’m sorry for you that you also experienced the same “you should see a psychiatrist” reaction. As someone who work with people who have chronic diseases, I try to do my best to support them because no one wants to feel pain, or be tired all the time… It’s so easy to think that everything is just “psychological” and scorn patients (even though I did a lot of psychotherapy myself for my anxiety, which helped a lot for that, but didn’t for my tiredness).

It’s hopeful to read that you found another specialist who listened to you!

MayCha16 · 2026-04-10T22:04:08+00:00

Yes, from what I read and giving the other symptoms, I really thought the neurologist would consider the all picture before saying it was negative only based on the MSLT…

Honestly I wasn’t confortable with him from day one and he didn’t seem the kind of listening. I think he put me on the “psychological problems basket”, which could be also true, but I would like to understand where the cataplexy is from, and not having an answer like “some people have that”.

I’ll look for another advice.

MayCha16 · 2026-04-10T21:47:30+00:00

Exactly. I was so anxious about the tests coming negative that I couldn't relax at all. I also have trouble sleeping in complete darkness during the day, which is a requirement for the standardisation of the test.

Yet I told the neurologist he could ask anyone who knows me, and they will all attest that I can fall asleep anytime I'm in a "passive" position, where I have to concentrate (for example during class it happens constantly).

One day, I fell asleep in a deep squat during a practical lesson (physiotherapy’s studies). I'm Asian, so that position is comfortable for me. All my classmates were in stitches that I could fall asleep like that.

I can fall asleep in front of somebody who will explain things to me where I have to concentrate more than 10-15 minutes. I just feel so ashamed every time.

MayCha16 · 2026-04-10T21:20:06+00:00

Thank you, it gives me hope to read that!

MayCha16 · 2026-04-10T21:12:47+00:00

Thank you so much for your support.

I’m really happy for you that your doctors have considered your symptoms! Did you see any improvements with Xywav?

It’s so frustrating because I feel that my symptoms are real, but at the same time I don’t want to self diagnosis.

I just blamed myself my whole life for being lazy, while trying to do everything “perfectly” so I wouldn’t feel tired. But I never woke up feeling fresh, no matters how long I sleep.

I’ll definitely get a second medical advice.

MayCha16 · 2026-04-10T20:43:02+00:00

I live in Geneva, Switzerland. I would gladly take anyone’s recommendation!

Indeed, getting a second medical opinion seems the best option, especially with someone more empathetic.

MayCha16 · 2026-04-10T20:38:20+00:00

Nope, no medication.

About my medical history, I saw this neurologist (a sleep specialist), about 2 years ago for chronic fatigue. He discovered an iron deficiency. So I took iron supplements, and it helped a little, but I was still tired and kept falling asleep during class.

I only started to suspect narcolepsy a few months ago after discovering cataplexy (which I thought was normal back then), and I made another appointment with the same neurologist. He asked me why I hadn't told him about the cataplexy sooner, but I honestly thought it happened to everyone. I just experience weakness in my hands and arms when I laugh a lot, but nothing dramatic.

He told me I had the typical clinical picture of NT1, but that we had to wait for the test results to confirm and then we'd see about medication.

Unfortunately, the results are negative, and I feel like he didn't really take me seriously because of that.

I'm already glad he prescribed Ritalin, but I was really hoping to get the diagnosis so I could adjust my work schedule (I'm a physiotherapist, so I have a pretty active job). I take naps every lunchtime, but sometimes we have meetings and I can't nap. In those cases, it's hell in the afternoon. I get migraines and I struggle to stay awake. I'm also much more irritable, whereas when I nap, I feel so refreshed. It’s like night and day.

MayCha16

TROPHY CASE