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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.

What do you do if your new Doctor doesn't think you have Cataplexy? After a sleep study. I was diagnosed years ago. First diagnosis was in 1

A MyNarcolepsyTeam Member asked a question 💭
Stevens Point, WI
May 7
 · 
Be the first to react
A MyNarcolepsyTeam Member

have someone document the cataplexy and give it to the Dr. there is a lot of .people question what we say.

October 11
A MyNarcolepsyTeam Member

Amy, Do not be embarrassed it is an illness and one you can't control. Remember stay safe when you are doing something. i was at a pool playing with my grandchild the thing i remember is when she got me to the stairs. don't worry how people feel.

September 24
A MyNarcolepsyTeam Member

How can anyone else truly make that call? Cataplexy doesn't look the same for everyone. Each of us know our bodies the best, especially when it comes to cataplexy. Mine doesn't present unless I'm unmedicated or really stressed. But when I have an episode, it's absolutely miserable and embarrassing, especially if it happens in public.

June 11
MyNarcolepsyTeam

That sounds incredibly frustrating — especially when you've been living with this for years and already have a prior diagnosis. It's worth knowing that cataplexy can be tricky to identify, even for doctors, because it looks so different from person to person.

Cataplexy symptoms can range widely, including:

- A droopy eyelid Show Full Answer

That sounds incredibly frustrating — especially when you've been living with this for years and already have a prior diagnosis. It's worth knowing that cataplexy can be tricky to identify, even for doctors, because it looks so different from person to person.

Cataplexy symptoms can range widely, including:

- A droopy eyelid or slack jaw
- Sudden knee buckling while walking
- Weakness in the arms or hands
- Full muscle collapse in more severe cases

Episodes are often triggered by strong emotions like laughter, surprise, or excitement, and a person remains fully awake and aware throughout. Because cataplexy is so variable, it can be missed or misread — even after a sleep study. A sleep study alone may not capture cataplexy directly.

Some steps worth considering:

- Ask for a referral to a sleep medicine specialist who has specific experience with narcolepsy
- Bring documentation of your previous diagnosis and any records from your original diagnosing doctor
- Keep a symptom journal noting when episodes happen and what triggered them
- Advocate clearly for yourself — describe your episodes in detail to your new doctor A MyNarcolepsyTeam member described how cataplexy affected their hands at work, causing them to drop things or lose grip entirely — a subtle but real symptom that could easily be overlooked or dismissed.

Don't be discouraged. Getting a second opinion from a narcolepsy-experienced specialist is completely reasonable and often necessary.

May 7

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