Posted by Elizabeth on April 27, 1999 at 20:15:32:

In Reply to: Re: Have I or havn't I? posted by Tony Greenwood on April 27, 1999 at 11:00:36:

WOW, am I ever glad to find you guys! Mary, you mentioned a booklet about the symptoms, including the not so well known ones I think? If so, I'd sure like to track down a copy. I know very little about this stuff, though the neurologist says I have narcolepsy, and the meager amount of info I have managed to track down sure sounds like me...right back to preadolescence, and up to the present, age 40.

I had never heard about the general weakness symptom that several of you mention, yet for many years I have experienced this to the point that I sometimes feel like I am consciously holding my arms and legs on by the power of thought alone - since my muscles feel so weak I feel my limbs are about to drop off. Any comments on that folks?

Also, I have read that the paralysis lasts only a few minutes, but I find that if I go back to sleep after about 6:15 a.m. then I am virtually paralyzed..sometimes for a couple of hours. I spend the whole time telling myself.."ok now, time to get up... lets go now...ok...one, two three up... and so on - to no avail. I can hear everything going on around me and keep hoping that someone will come in and talk to me. Because the odd thing is that if someone talks to me directly for a few minutes, then I can drag myself up. Oh yes, this is in someway radically connected to my eyes because USUALLY, if I can open my eyes, then I can move ((also, if I glance down, when I bring my eyes back up it is like the eyes roll up, but the eyelids stay down, so if basically closes my eyes, and then I just about fall asleep, all in an instant)Otherwise I might be able to roll over once or twice in two hours, but thats all (these are aborted attempts to get up). This is a HUGE functional problem for me, and since I have a disabled child it is a problem for him too. I went to a sleep clinic recently, and made them promise to take a close look at what was happening in the early A.M. They said they would, but then, because I happened to have a bad case of restless legs that night they woke me up at 6:30 and said that was my problem and would not do the follow-up daytime test. I was SO mad! Of course, the restless legs haven't bothered me since! I am desperate to find out what is happening to me when this coma type thing occurs. Please lend me your wisdom.

Last question for tonight. With regard to taking naps. I do find that very brief naps help alot. However, I feel like I want to take LONG naps, these tend to turn into coma affairs also. What should one do.. I could sleep most of the day away.

I can't wait to hear from someone who knows something about this stuff. Thanks - Elizabeth

Follow Ups:

• Re: Have I or havn't I? Mary 4/28/99 (1)
  • Re: Have I or havn't I? Elizabeth 4/28/99 (0)

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