Sunday, January 10, 2016

If this is the first time you've been to my blog go to the December 23 the second posting or maybe it's Dec 27 . I didn't write the second posting .I copied it from a facebook support group page . It might explain one of my problems. If you're sleep deprived your memory and thinking are impaired. Now it's not as bad as it used to be since I take supplements that help with those problems.   If you see me I might look drunk, talk weird, look as if I'm in a trance,or I might fall down all of a sudden. I take 60mg of generic adderal. That does not always keep me awake nor does it help with the constant fatigue. Sometime it makes me very irritating to be around. It's irritating to me too .I had a MSLT test to confirm my diagnosis. No One is going to take you seriously even if you're falling down with cataplexy. Most of your friends won't get it or understand .  Fortunately my family understands. I consider close friends as a member of my family. The only Dr that understands all of my symptoms is my sleep Dr.   One particular neurologist who must have had only one patient with NC didn't even understand my cataplexy or that I could take such a strong dose of a med and not have a hard time falling asleep at night. Most PWN are in and out of rem so many have insomnia.  They might wake up many times a night.  Luckily I have an understanding family medicine Dr.

I have to explain my weirdness that's it's normal for PWN so if I see a new Dr they don't flip out or come up with another diagnosis like weird talking syndrome.  It takes alot of work but you have to keep track of your medical problems, all your labs results past results etc.  I once went to this place I call the palace of malice  . I had called  asked about getting my records and how hard it was to find anyone that knew anything about N.  Well we have one such person in our palace. The palace was easier to drive to than other places just took longer to get there. I had stopped driving on highways. Did this person know anything about NC ?   No, she knew very little . I wasn't going there to be treated for my NC. They should be aware of some of my symptoms.  Unfortunately the  person didn't pay any attention to my boldly written My TSH is best at 2.00 if it goes up let me know .  It kelp going up and up to 4.39 .  That's when I started having cataplexy all the time.  I found this put at another appt . Even the endo I went to ignored my paper. By then I was falling asleep at his appointment .  The person who thought she was a health provider was very fluent in sounds good so I'll add that on her report