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Change In Diagnosis To Nacrolepsy With Cataplexy

nacrolepsy cataplexy diagnosis

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#1 Leslie

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Posted 01 July 2013 - 02:07 PM

Does anyone know or have had experience in developing cataplexy after the initial diagnosis of narcolepsy without cataplexy?

 

I have been dropping more and more things and have fallen several times even when standing still. Normally I am in motion when I fall which is all too frequently.

 

Leslie



#2 Hank

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Posted 03 July 2013 - 03:27 PM

If you have N, you do stand the chance of developing Cataplexy.

It is possible that you have not identified certain incidents and their possible relation to Cataplexy. For example, for years, I had falls, slurred speech, trouble with my hands, weakness in my legs- and never considered that they could be a symptom of something. I just "walled off" those experiences which were embarrassing. I could not forget them fast enough- kind of like passing gas in public.

So, when the N diagnosis was being considered, I had to look at these events closely. When I added them all up with my doctor, they painted a pretty clear picture of Cataplexy. A different doctor later witnessed clear cut cataplexy. I am no longer embarrassed of it happening, which is a huge relief.

I hope you do not have it. But if you do, I hope that you know it. It is what it is and knowing makes it easier to manage.

#3 sk8aplexy

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Posted 03 July 2013 - 07:02 PM

Well said Hank.

 

The first few years, beginning at 28, that I had any awareness of what was causing me to collapse, which had been occurring since around 20; I believed that perhaps I had Cataplexy with Narcolepsy and that there just was not much likelyhood of Narcolepsy being the case, since I'd not fallen asleep uncontrolled much.  Yet, the more I read about it and especially of other people's experiences and stories of living with it, it became quite clear I had Narcolepsy with Cataplexy.

As a kid, I could not lift my arms while being tickled, and I knew it was a strange thing but it only happened when I was being tickled in the belly while laughter was intense.  Rolling around and laughing out loud occurred, no problem, but my arms would just not lift.

It was around 30, when while reflecting, in hindsight with the grasp and understanding I was beginning to gather regarding the condition/disorder/disease, that it hit me and I realized Cataplexy had been there for so so long.

Also, around age 30 at a different point, in a similar respect, while reflecting upon the past.  Thinking on the tiredness, the brain fog or cloudiness, how often I slept, the awkward moments of interacting and/or engaging with others (as I've always had a hard time socializing for many reasons, a main one being how exhausting it can be and especially while with more than one other person), I realized how obvious it was and how broad the effects were of having, and having had for so long, Narcolepsy...

 

All of that is to somewhat say the same as Hank.  It definitely can and does progress (not necessarily for everyone and perhaps only at certain points in time, or for certain lengths of time? -no 2, are the same-), although it is also an odd and hard thing to note (and/or understand, at first, if I didn't experience it myself, I can not begin to imagine attempting to actually at all understand it) but you are on the right path and in the right place, for beginning that process.

For me, with the understanding of the condition/disorder/disease, with time and much observation upon my self along with awareness or recognition, it has become much easier to juggle but remains a continual thing to juggle.

I do also hope that you do not have it.  I also second Hank (again) in saying 'it is what it is.' 



#4 Leslie

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Posted 08 July 2013 - 07:59 PM

Thank you and to Hank. It is helpful to know other's perspective. It is hard for so many people to understand what narcolepsy is and its impact.

 

Leslie







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