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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 The Dreamer

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Posted 01 July 2013 - 07:00 PM

There can be times where Cataplexy gets worse and other times where it lessens.  It could be that your cataplexy was so mild that it wasn't noticeable before, but has now changed to where it is.

 

For me, after learning about Cataplexy (from my first NN conference), I had started to identify things that had happened in my past that might have been mild cataplexy.  I was also told that I exhibited mild Cataplexy at the conference, though I didn't feel like I had.

 

And, I now recall how I would trip for no apparent reason occasionally while walking with co-workers.  (when I had asked my Neurologist if I had cataplexy, he asked if when I'm with a group of friends and I hear a really good joke, do I fall to the ground... from that he ruled I don't have Cataplexy......he's the same Neurologist that had said my MSLT showed some SOREM for naps 3 and 5 supporting a diagnosis of Narcolepsy...but in every visit after that he would say something like "what you're experiencing is related to Narcolepsy, which you don't have."

 

Last year I went through a period where I was tripping much more often and even fell a few times....once landing me in the ER, after which the diagnosis of Cataplexy was made.  My Neurologist didn't challenge that diagnosis, but continued to say the same phrase about whether I had Narocelpsy....and continued to use it even after another Doctor reviewed my MSLT and other records and after meeting with me made the diagnosis and started me on Xyrem.  The doctor making the Cataplexy diagnosis, wasn't comfortable with or interested in the cost to become able to prescribe Xyrem....so he apparently thought no Narcolepsy diagnosis...no Xyrem (since its only approved for helping with Cataplexy in patients with Narcolepsy with Cataplexy, or for helping with EDS in patients with Narcolepsy without Cataplexy.)

 

In a later appointment, when I had started having problems (I had originally gone all the way to 4.5/4.5, but then backed off)....he said to not change anything yet, because we can go through periods where we have problems come back for seemingly no reason (he often uses his wife as an example, so he mentioned that she's recently been having full cataplexy episodes in the kitchen lately which has freaked him out...even though its what he treats [he's the only doctor in town that does], and he had known her before Xyrem, etc.)  And, her narcolepsy doctor has basically said the same thing about it.

 

More recently, I'm been plagued with Insomnia....nothing like laying in bed loaded on Xyrem and not being able to sleep.  And, I had learned early on that getting up and doing stuff is a really bad thing to do with Xyrem...

 

The Dreamer.



#3 Leslie

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Posted 02 July 2013 - 08:54 PM

Thank you. I am definitely going ask about it next time I see either my sleep doctor or my neurologist. Or maybe one of ny many other doctors.

 

it is so hard sometimes to know what symptoms are related to what. I apppreciate knowing that I am not crazy thinking I might have developed or have had cataplexy to a mild extent before.







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