How long did it take to get diagnosed with narcolepsy?
So I was 18 years old (198😎 and falling asleep at the wheel and hearing horns blowing. I had 3 MSLTs and the doctors were unable to diagnose me. They said it could be Insomnia, Narcolepsy, or something else and I have forgotten the third thing. They gave me signs and symptoms of each one and I knew it was Narcolepsy. It was not until 2014, when my son started having issues in school staying awake. I took him and he was diagnosed with Narcolepsy and I asked for a referral to a adult Pulmonologist. I was also diagnosed with Narcolepsy with Cataplexy. So I have been on medication since age 18, and my son refuses to take medication. He is now suffering with psychosis from sleep deprivation and I am not having any luck getting him help. I was able to get him diagnosed with NOS psychosis March 9-13 when I had him involuntarily committed. Now I am unable to get him put into a facility so that he can receive an injectable and calm the psychosis and possibly get some sleep. I am in the medical field and it is breaking my heart that my child is going through this. I have tried to teach him how to advocate for himself and and help him with options but he refuses.
My heart aches for you. That must leave you feeling so helpless. Sadly, there is little you can do except wait for him to come around and either ask for help or help himself. Please know we are here for you both whenever you need us. - Lori (Team Member)
I was in my late 30s. I fell asleep mid sentence while talking to my Dr. Along with other symptoms, my Dr. Had me go threw sleep studies. He diagnosed me with narcolepsy. I have been trying to cope for 20 past yrs. It is more manageable now with medication and napping however it is still a very long journey as there is no cure as of yet. I hold on to the hope that one day there will be........
1 year
Yes I have and I am appealing the denial with a law firm specializing in such cases. I'm praying it will go through. I have MANY other conditions as well, managing all working against me is a full time job in and of itself. The medications, +25 a day, several being many times a day are thrown off schedule by the narcolepsy. My "life" is a mess. 😢 Hi
. Your chances are good if you are using a lawyer who specializes in disability claims. Please let us know how it goes. I'll be thinking of you. - Lori (Team Member)
I had symptoms since 3rd grade but it took until high school to be checked out. My teachers just thought I was like bored or rude but I would fall out of my chair at school. I think the study was inconclusive but the doctor said I was the sleepiest girl he had ever met and that I could fall asleep in under a minute. So like 7 years…
I wish you'd been diagnosed sooner. You would think the teachers would have realized that something is physically wrong with a child who routinely falls out of her chair. How maddening. I'm glad you finally got a diagnosis though. Did that help you through the rest of high school and beyond? - Lori (Team Member) many people are unaware of narcolepsy and it's sighns and symptoms. The general public doesn't seem to realize just how devastating narcolepsy can be and is. Educating the general public helps.Getting the information to teachers,friends,family is a good start. Spread the information. Help others understand.Its another way to help those that are suffering with this.
