New to the board. Sorry if there is a sticky about this i missed.
Long time "sleepy" person. History of autoimmune disorders (rheumatoid arthritis, hearing loss, and hives).
6 months ago I got my doctor to prescribe me Adderall 20mg XR morning and 10mg IR night for fatigue. This dose is not helping all that well, and seems to be on the low side for Narcolepsy from what i've read.
Last week i read that Narcolepsy is a result of the immune system attacking Orexin by mistake. That is the same thing that happens with RA, and the rest of my immune disorders.
I would like to ask my doctor to test me for Narcolepsy but he has a hard time listening to me when i suggest something.
I have a lot of symptoms of N including the numb, tingling muscles when : sleeping, awake, nervous, excited, laughing too hard, or getting startled. The need to sleep 3 times a day for at least 30 minutes (even on Adderall). Falling asleep and dreaming within 2 minutes. A lot of twitching and yelling when dreaming. People try to wake me up when shaking me but they can't. I can feel them shaking me but cannot wake myself up, and can think "why can't i wake up?". I have also fallen asleep driving on many occasions, with one accident, but i'm afraid to mention that to him.
I have written all this down. I have been having these symptoms for at least 10 years. I have never told him about it because i thought it was normal for everyone, or that i was just a deep sleeper, or tired from the other diseases. The other diseases are all in remission now, but the tiredness is still a huge problem.
I have had a sleep apnea test done which was negative. I have been anemic in the past but when it has been fixed the tiredness does not lift.
Can someone please give me some advice on how to approach this with my Doctor?