Narcolepsy Forum Posting

Posted by Javacat2000 on August 20, 2003 at 13:56:36:

It's been a while since I have posted a message here, but I've still been reading the posts and pondering whether or not I have N. Also, I guess I've been looking for that little tidbit of information which would tell me, no, I most definitely do not have it (I haven't found it yet).

My primary doctor has already been treating me for ADHD with Adderall XR (30 MG 1/day) which improved my alertness tremendously, but I had noticed more frequent and severe sudden muscle weakness (something I've had since I can remember, and connected primarily with anger, laughter or fatigue) when it began to wear off. I would begin slurring my speech and actually start to doze off mid-conversation. I was clumsy and dropping things. Quite embarrassing. I was afraid people would think I was drunk! I knew the Adderall wasn't causing it, in fact it had actually improved my muscle control a little bit, and it was happening when the drug was wearing off. I finally showed my doc a picture of me having my picture taken (indoors, flash). Right when the shutter clicked, someone made me laugh, and in the picture I am laughing, but the corners of my mouth are turned down giving my face a grotesque expression (oh, how I've always hated being photographed!) and I'm leaning against my husband (we are sitting at a table in a restaurant). The doc looked at it and said, yes, I should definitely see a neurologist. The waiting period was 2 months for the appt., and in the meantime the doc had prescribed me Zoloft for depression. After about 4 weeks on the Zoloft I already noticed a vast improvement in muscle control. For the first time in my life I felt as though I could express my emotions freely without my face looking grotesque or stumbling, slurring speech, etc. I was so overcome with joy at this prospect that I collapsed onto my bed in a heap and laid there for about 20 minutes. Funny and ironic, eh?

I finally had my neurologist's appointment yesterday. It was better than I could have hoped. This doctor sympathetic, and knowledgable about N. The first thing he did was to ask me to describe the nature of the muscle weakness incidents. The first words out of his mouth after that were "have you ever heard of cataplexy?" After over an hour of discussion and muscle testing to make sure that my muscles were otherwise normal, he informed me that I had N and would need to see a sleep specialist to have my medications adjusted and possibly changed for the EDS and the cataplexy. He didn't say anything about a sleep test. I simply recalled some incidents where I fell down with no explanation, and he asked me about SP (yes), HH (yes), I described a few amusing and bizarre incidents (like when I leaned on a perfectly strange man in the back of an elevator without realizing he was there) and he seemed positive that it was N and questioned the ADHD diagnosis.

I was just wondering if anyone here has experienced such a rapid diagnosis based on a description of symptoms. I would actually love to forego the sleep test, because it would be a hardship financially (my insurance demands out-of-pocket payment for diagnosic tests). The other reason would be that I'm actually afraid that I wouldn't be able to work, drive, etc. without my medications (I'm self-employed and therefore have no benefits such as sick leave). I understand you must be off any meds for a study to be accurate. It's just hard to believe that he is so certain without any "high tech" testing, but on the other hand it all makes sense now.

Thanks to everyone in this forum for sharing your stories--it finally led me down the right path towards my own healing.

Java
"Keep your dreams alive!"

Follow Ups:

• Re: DX with no sleep study? (Long) Shadow 00:39 8/25/03 (1)
  • Re: DX with no sleep study? (Long) Javacat2000 08:30 8/25/03 (0)

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