Dr Dimari
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Post: 50759319_106 created on Tue Nov 03, 2009 12:35 pmPosted: Tue Nov 03, 2009 12:35 pm
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Seaine Heeeey I am back! I got an internship in Nevada and so I went to a sleep specialist here to get my medication refilled. He really, really wants to say that I have narcolepsy as opposed to idopathic hypersomnia. He is of the opinion that narcolepsy is more common, and I also assume that doctors just generally don't like giving a diagnosis that involves a word meaning "we don't know why." I don't really agree with him because my symptoms do not quite match narcolepsy. My sleep study was normal aside from showing that I was too sleepy, so REM and other sleep stages were not abnormal. Narcoleptics take short naps and feel refreshed when they wake up; I take naps that are an hour or two long and I wake up still feeling groggy and tired. I understand it is still possible that I have it, and it's progressive so other symptoms could show up later. I have developed two new symptoms. I have begun sleepwalking on an extremely frequent basis - sometimes almost every single night. I usually just wander around, act like I am getting ready for work like I would in the morning, or move items that I move often when I am awake. I have also begun hallucinating very often when I wake up for short periods in the night, when I wake up in the morning, or when I wake up from naps. They are generally innocuous such as seeing a pair of pants hanging on the rack where there isn't one or seeing the cat in the room when I've locked him out. It only happens in the few seconds after I have woken up. It is not sleep paralysis or hypnagogic hallucinations because I have sat up before while it was happening and there is never any unwarranted feeling of fear. These two new symptoms do not really shed any light on what I have or do not have, and I wonder if they are side effects of Adderall. I have sleptwalked or hallucinated in this way on very rare occasions, but it was only when I started taking Adderall everyday that it started happening so frequently. The new doctor ordered a test for alleles that nearly all narcoleptics have. I tested positive for them, DR15 and DQ0602. However, I read that 20% of the general population has these alleles, and only 1 in 20,000 people have narcolepsy. Statistically speaking, I'm more likely to have the alleles and NOT have narcolepsy. However, I do obviously have a sleep disorder with excessive daytime sleepiness so I find it likely that the new doctor will give me a diagnosis of narcolepsy. After that long rant, I do actually have a question. I asked for my thyroid to be tested as well. The results are 1.32 for TSH and 1.23 for free T4. I tried looking online but couldn't really find anything enlightening on what these results may mean, other than that it's within the very wide normal range. Well I can understand why he termed you narcoleptic, and it it something to still consider. The genetic tests are 40% indicative of narcolepsy if you have symptoms and the alleles. I think however, if your sleep studies came back negative (especially REM) then there is room for further investigation: the next step could be an MRI. This shouldn't worry you, it would probably turn out normal, but this is what would happen in the UK. If this was the case, and it didn't show anything, You probably will receive the diagnosis of narcolepsy. I admit, Idiopathic Hypersomnia might be a better diagnosis, but you are right that doctors want to file people in meaningful diagnoses, if that makes sense. With your two additional symptoms, the walking and the hallucinations, it does add to it though. Plus hypnopompic hallucinations are usually benign, and do happen in the first instance of awakening, and are usually generic things attached to daily life. However, if you have other symptoms such as excessive tiredness, then its more evidence to the picture. So in a quick conclusion: It is likely you have narcolepsy, but it maybe an atypical presentation of the illness (not actually falling asleep sporadically, no abnormal REM studies). I wouldn't want to label you incorrectly, but the main thing is to get treatment underway, especially as you have an internship. Narcolepsy at the end of the day isn't a dry cut list of things you need to have a diagnosis, as with main psycho-neurological conditions. (I say "psycho" because there is some limited evidence that other things rather than just neurological issues can feed into the severity of it). I am not sure as well, it is a little out my field, if Im being honest, but thanks for keeping us updated. What I might say is try and do some exercise and relax, and maybe think if you could have things that make it worse: eg depression. Also with Adderall because its a stimulant, you can get those effects, maybe see if you can get it changed to another? Your TSH and T4 are normal, so I wouldn't worry too much. Good Luck, and if you have any further questions, feel free to ask them. |
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