Discussions By Condition: Medical Errors

narcolespy ?????

Posted In: Medical Errors 10 Replies
  • Posted By: bikedaddy
  • November 15, 2009
  • 04:42 PM

Recently came across a person who claims to have the rare sleep disorder and stills claims she can function in society normally except she can't work. After all my reasearch I'm unable to find anything dibilitating about this. While it is very bad if mistreated or undiagnosed, I'm wondering if there is a definative test for this condition, and if so why more doctors don't apply this test before declaring this problem??? And also how someone can claim this is totally dibilitating when all the medical sources state it is not????

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  • I'm Narcoleptic. I'm now 25 and began showing symptoms at 14. At my worst (when I was 16 and again at 23) I slept 20 hours a day. Currently, my sleep is tightly regulated and I am able to 'handle' it - but my family pays over $1500 each month for medication to keep me awake. One thing I can tell you is that yes, there is a test for this. It involves an overnight sleep study and a daytime nap test. As to why doctors don't test for it, that is harder to say. It took me four years to get a diagnosis of a generalized sleep disorder (idiopathic hypersomnelence), another four years before getting another sleep study done that showed I had full on Narcolepsy and then another 6 months to find a medication regime that worked for me. It can best be described as "if you hear hoofbeats in Central Park, don't think it's zebras". What this means is when a teenager goes to a doctor complaining of extreme fatigue and difficulty staying awake, the doctor doesn't say "Hmm, sounds like a sleeping disorder". Instead they say depression, mono, thyroid, even fibromyalgia/chronic fatigue. That said, you have to understand that like with any disease/disorder, Narcolepsy has varying levels of severity and effects each person differently. For example, I don't have the hallmark symptom of Cataplexy. Instead I have hallucinations and an irresistible urge to sleep during the day. When I go to bed at night I wake up the next morning feeling as though I never went to sleep and completely unrested (think constant sleep deprivation). This has in turn led to my having an extremely weakened immune system - I get sick very easily, a mild cold for someone else can keep me in bed for 2 weeks.Your question of functioning in society vs working doesn't really give enough information. Can I drive a car? Sure, but I got into a near fatal accident at 16 which led to my sleep disorder diagnosis. Can I go out to dinner with friends or family? Sure, but after I eat a meal I have extreme difficulty staying awake. Do I date? Sure, but it's hard as ***l and takes a very understanding partner. So yeah, I can tell you that as far as functioning in society, I have pretty big problems with that - I missed out on being a teenager/young adult and have ended up extremely isolated socially. Since I'm sick so frequently, I'm unable to hold a full time job and support myself despite having a bachelors degree. The disability aspect of Narcolepsy isn't always visible or obvious in any way. Someone with Narcolepsy may be able to go out and about in public but unable to stay awake/alert enough to work a 40 hour a week desk job - and may be too fatigued to do even slightly physical work. Narcolepsy can also play a huge toll on your mental well-being. Friends only take the "I overslept/I'm to tired" for so long before simply not inviting you along. Teachers and employers may label you as "lazy" or "undisiplined" (my grandmother still thinks that if I just "try harder" I'll be able to stay awake). Dating is a complete nightmare - how can you expect someone not to be insulted when you fall asleep during your first date, and second and third dates. I also have to live with the "what if's": if I was healthy I'd be in my third year of law school instead of working as a secretary, I would be able to go out at night and have a beer with friends. I'd be interested to know what medical sources you've seen that say Narcolepsy isn't debilitating. It isn't covered under the Americans with Disabilities Act (last I checked) because it isn't categorized as neurological or immune disorders. While doctor's understand the effect it has on the body, they are unsure as to the root source. I hope this helps. I can answer any further questions - Sleep Disorder Awareness is a pet project of mine.
    Anonymous 42789 Replies
    • November 21, 2009
    • 05:22 AM
    • 0
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  • I'm Narcoleptic. I'm now 25 and began showing symptoms at 14. At my worst (when I was 16 and again at 23) I slept 20 hours a day. Currently, my sleep is tightly regulated and I am able to 'handle' it - but my family pays over $1500 each month for medication to keep me awake. One thing I can tell you is that yes, there is a test for this. It involves an overnight sleep study and a daytime nap test. As to why doctors don't test for it, that is harder to say. It took me four years to get a diagnosis of a generalized sleep disorder (idiopathic hypersomnelence), another four years before getting another sleep study done that showed I had full on Narcolepsy and then another 6 months to find a medication regime that worked for me. It can best be described as "if you hear hoofbeats in Central Park, don't think it's zebras". What this means is when a teenager goes to a doctor complaining of extreme fatigue and difficulty staying awake, the doctor doesn't say "Hmm, sounds like a sleeping disorder". Instead they say depression, mono, thyroid, even fibromyalgia/chronic fatigue. That said, you have to understand that like with any disease/disorder, Narcolepsy has varying levels of severity and effects each person differently. For example, I don't have the hallmark symptom of Cataplexy. Instead I have hallucinations and an irresistible urge to sleep during the day. When I go to bed at night I wake up the next morning feeling as though I never went to sleep and completely unrested (think constant sleep deprivation). This has in turn led to my having an extremely weakened immune system - I get sick very easily, a mild cold for someone else can keep me in bed for 2 weeks.Your question of functioning in society vs working doesn't really give enough information. Can I drive a car? Sure, but I got into a near fatal accident at 16 which led to my sleep disorder diagnosis. Can I go out to dinner with friends or family? Sure, but after I eat a meal I have extreme difficulty staying awake. Do I date? Sure, but it's hard as ***l and takes a very understanding partner. So yeah, I can tell you that as far as functioning in society, I have pretty big problems with that - I missed out on being a teenager/young adult and have ended up extremely isolated socially. Since I'm sick so frequently, I'm unable to hold a full time job and support myself despite having a bachelors degree. The disability aspect of Narcolepsy isn't always visible or obvious in any way. Someone with Narcolepsy may be able to go out and about in public but unable to stay awake/alert enough to work a 40 hour a week desk job - and may be too fatigued to do even slightly physical work. Narcolepsy can also play a huge toll on your mental well-being. Friends only take the "I overslept/I'm to tired" for so long before simply not inviting you along. Teachers and employers may label you as "lazy" or "undisiplined" (my grandmother still thinks that if I just "try harder" I'll be able to stay awake). Dating is a complete nightmare - how can you expect someone not to be insulted when you fall asleep during your first date, and second and third dates. I also have to live with the "what if's": if I was healthy I'd be in my third year of law school instead of working as a secretary, I would be able to go out at night and have a beer with friends. I'd be interested to know what medical sources you've seen that say Narcolepsy isn't debilitating. It isn't covered under the Americans with Disabilities Act (last I checked) because it isn't categorized as neurological or immune disorders. While doctor's understand the effect it has on the body, they are unsure as to the root source. I hope this helps. I can answer any further questions - Sleep Disorder Awareness is a pet project of mine.Narcolepsy is an HLA-B27 related autoimmune condition - Please take a peek at this > http://www.rhnegativeregistry.com/rh-negative-factor-recessive-trait.html it might interest you. Do you happen to come from a line of Rh-Negative Family members?
    thefarrellfam 46 Replies
    • February 26, 2011
    • 04:28 PM
    • 0
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  • Hey fellow forumer, I am from Ireland , City of Ennis. Just join here recently, sorry been busy lately so din't post much but this place is really interesting.. Oh yea I love to join volunteer works and planning to go over japan soon to help the casulty due to the recent tsunami. I also spend my free time doing weights etc.
    Vieshobbini 88 Replies Flag this Response
  • Hi Guys, I am from Ireland , City of Ennis. Just join here recently, sorry been busy lately so din't post much but this place is really interesting.. Oh yea I love to join volunteer works and planning to go over japan soon to help the casulty due to the recent tsunami. I also spend my free time doing weights etc.
    Vieshobbini 88 Replies Flag this Response
  • Nice to meet u.., I am from Ireland , City of Ennis. Just join here recently, sorry been busy lately so din't post much but this place is really interesting.. Oh yea I love to join volunteer works and planning to go over japan soon to help the casulty due to the recent tsunami. I also spend my free time doing weights etc.
    Vieshobbini 88 Replies Flag this Response
  • Hi Guys, I am from Ireland , City of Ennis. Just join here recently, sorry been busy lately so din't post much but this place is really interesting.. Oh yea I love to join volunteer works and planning to go over japan soon to help the casulty due to the recent tsunami. I also spend my free time doing weights etc.
    Vieshobbini 88 Replies Flag this Response
  • Nice to meet u.., I am from Ireland , City of Ennis. Just join here recently, sorry been busy lately so din't post much but this place is really interesting.. Oh yea I love to join volunteer works and planning to go over japan soon to help the casulty due to the recent tsunami. I also spend my free time doing weights etc.
    Vieshobbini 88 Replies Flag this Response
  • Hey fellow forumer, I am from Ireland , City of Ennis. Just join here recently, sorry been busy lately so din't post much but this place is really interesting.. Oh yea I love to join volunteer works and planning to go over japan soon to help the casulty due to the recent tsunami. I also spend my free time doing weights etc.
    Vieshobbini 88 Replies Flag this Response
  • Hey fellow forumer, I am from Ireland , City of Ennis. Just join here recently, sorry been busy lately so din't post much but this place is really interesting.. Oh yea I love to join volunteer works and planning to go over japan soon to help the casulty due to the recent tsunami. I also spend my free time doing weights etc.
    Vieshobbini 88 Replies Flag this Response
  • Hihi guys., I am from Ireland , City of Ennis. Just join here recently, sorry been busy lately so din't post much but this place is really interesting.. Oh yea I love to join volunteer works and planning to go over japan soon to help the casulty due to the recent tsunami. I also spend my free time doing weights etc.
    Vieshobbini 88 Replies Flag this Response
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