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Posted 3/5/2008 11:36 AM (GMT 0)
Well i did the sleep study and yes it indeed told the story. Apnea didn't show up so they kept me for naps.

Wow they are smart.

At home id busy myself on here while getting my little boy ready, (mind being active) and off to school, then id transition from here to loading dishwasher, and etc to avoid sitting down ..

their enviornment is designed to not afford you these outlets. They kept saying stay awake and i kept failing it miserably.

then once every 2hrs they hook me up and lights out, about the time id wonder if id go to sleep theyd be waking me up and id be telling them id dreamt of kittens (they had a book where others dreamt the same things i did)....

I explained that it isnt that bad at home. They explained they know that, but they set it up that way and kept saying dont fall asleep so id be giving it my best shot.

Short of it all? I have full blown narcolepsy. I dreamt within 2 minutes of the last nap even.

I cried about it. When you read their brochure that tells you it ruins many marriages and you know youve already got MS, well its just seeming that i cant get more diagnosis' dumped on me.

The results will be faxed and proviigil will take awhile to get to proper amount. He assured me that where it would "speed" another, in me, it would make me feel normal.

So....this is what I have w/cateplexy:which is why  i could hear the things around me.

thanks,

kiera

Posted 3/5/2008 11:44 AM (GMT 0)
Hey, Kiera, sort of a mixed blessing, don't you think?  You KNEW something was wrong...now it has a name, (names?), can be treated, and once the medication levels are worked out, you'll feel MUCH better and be able to function much better!

Sounds like the booklet you read offered "worst case scenarios"...yes, marriages can be destroyed over one spouse having a chronic illness.  But not necessarily!  Sounds like you and your spouse need to talk about this carefully, and each offer the other as much support as possible, until you get all this worked out.

When you talk again with your doctor about the sleep test results, ask him if there is any connection between you having MS and the narcolepsy -- is it indeed a "new" disease added on, or is the narcolepsy caused by an MS lesion in the wrong place?

Hang in there...I know you're scared...but the boogie-man has a name, now, and some treatment options, and maybe can at least be controlled.  Take care!

Posted 3/5/2008 11:48 AM (GMT 0)

Here's a website that gives a pretty clear and thorough description narcolepsy, including treatment, things you can do to help manage it, and even some links to studies being done:

http://www.ninds.nih.gov/disorders/narcolepsy/detail_narcolepsy.htm

Posted 3/5/2008 11:52 AM (GMT 0)
You are correct about mixed blessing. As i told my hubby last night. Who knows after im able to not walk around feeling as if im in dire need of sleep that some of my achiness might leave and how many symptoms it might relieve. The partial paralysis comes from this as well. So it may be that i do indeed find more function and ill surely ask if this is from where my lesions are located.

Again the boogie man..your right. Before it was there and even scarier when it felt like they were small coma's...now i know ill not go into a coma and that its highly treatable.

It also says often mistaken for prescriptions med's causing it, but they do not. So, alot of times people get told its there medications when they really have nothing to do with it. I guess thats why taking some away or adding some while watching wouldnt reveal any of them in direct correlation with the attacks. Had one the night of going to the clinic as well.

Strong emotions can bring them on, looks like stress has to go! Or its going to drag me with it lol. So your right, ive got to wonder just how much better ill feel wiht sleep and with awake time being true awake/alert time.

My ribs are aching and requiring liquid ibuprofen. What began as chostachondritis has now spread to ribs on left of my chest, under my arm, and around to my back. My doctor wants to see me (gp) might be i need replenished on vit d or something else going on she said. (AYEEEEEE) sorry had to throw one emotion in lol.

Thanks ms. uppity

kiera
Posted 3/9/2008 4:19 AM (GMT 0)
Wow, Kiera, good news I think with having a dx and a med to help you out on it!  But I hear ya on the "one more thing"... will be hoping sleep alleviates or softens the intensity of the some of the MS. I know when I get a really good nights sleep (usually drug induced with pain reliever and muscle relaxer) I feel much better the next day. But I have to plan those days so I can sleep in a bit later to fully utilize the meds.

Amazing how much planning and organizing life takes now isn't it?

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